Medical Home Meeting: March 11, 2015

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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.

FCSN.org 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

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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!

Medical Home Meeting: January 14, 2015

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Our January meeting took place on a cold winter’s day.  Kate Agin, from Northeast Utilities (now Eversource Energy), spoke to us about gaining protection from termination of utility services.  If income eligible, anyone is protected from utilities shut-off during the winter moratorium–Nov 15-Mar 15.  Household incomes must qualify for the Low Income Home Energy Assistance Program or be 60% of the state’s median income.  Documentation must be renewed every three months.  Kate emphasized that protection from shut-off does not mean that people will not have to pay for the energy that they used during that period, and it doesn’t eliminate the unpaid bills.  Many families do not understand that distinction.  Utility bills accumulate during the protected time.  One common myth is that the State is picking up for the unpaid bills.  THIS IS NOT TRUE.  Payment arrearage management plans are available, so Kate urges families to call if they are overwhelmed by mounting utility bills.

Shut-off protection is provided to income-eligible customers with serious or chronic diseases.  A certification of illness must be completed by a physician, physician assistant, nurse practitioner, Board of Health, or other authorized agency.  Medical certification must be renewed every 3 months (serious illness) or 6 months (chronic illness).  Kate pointed out that income, not disability, determines hardship protection.  Another common myth is that if a child needs electricity for a medical device, there is automatic protection for the household. THIS IS NOT TRUE.  Families are qualified due to income, not illness.

Families with special needs children should contact their energy providers to place a “Medical Notice on File”.  Although this doesn’t guarantee shut-off protection for financial reasons, this notice will alert the utility company about the family’s circumstance.  Having this file in place DOES NOT impact the financial responsibility for the bills.  Electric companies will provide generators during power outages, but the company must be informed about the family’s need.

Utility companies do have several programs to help low income households.  If a Western Massachusetts family does not qualify for state or federal energy assistance, the Good Neighbor Fund may help.  Kate urged us to tell our families not to be afraid to call the utility company.  There are programs to help families.

For detailed information about energy assistance, including help from non-government programs, please check out MassResources.org.  Energy assistance includes cord wood and wood pellets.

For important reminders about storm safety, check out this video: