Work Group Meetings

Medical Home Meeting: May 11, 2016

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We welcomed 40 people to our May meeting. Dr. Sadof gave a brief update on staff changes at Baystate’s Pediatric Neurology and Pediatric Pulmonology practices. He stated that the ultimate goal is to keep care local. For the immediate future, primary care providers will write prescriptions for stable patients, and each family will have care plans that include specialists in Boston, Worcester or Hartford. We understand that a 2-hour drive in the car is very hard on kids with medical complexities. Dr. Sadof stated that the drive itself will wipe out a kid.

In other updates, the group heard from 4-C’s Eric Volz-Benoit that the Massachusetts Early Intervention conference was excellent.

Jesse Hagerman, Manager of the Child Life Program at Baystate Children’s Hospital, and Deb Levine, LICSW at Baystate Medical Center, talked to the group about efforts to reduce any trauma that hospitalization has on a family.  We know that some children experience many hospitalizations. The Child Life Program addresses the impact on the patient, as well as siblings, parents and other caregivers. Child Life provides age-appropriate explanations of hospital procedures, and guides families through expressing their emotions through play therapy, music therapy, and doll play. Therapists consider the unique needs of each child and family. Jesse affirmed that the Child Life Program teaches life-long skills in coping with trauma.

Our second speaker was Shelly Bathe-Lenn from The Garden, A Center for Grieving Children & Teens. The Garden helps families cope with death, no matter how long ago the death occurred. Schools identify families who have experienced death, and contacts The Garden. The Garden offers free support through group healing activities. Group meetings start with an all-ages healing circle, and moves onto healing activities for specific age groups. The Garden does not provide individual therapy, focusing instead on the shared experience of loss. Here is a story about one woman’s experience. The Garden will visit schools for group work with kids.

Shelly recommends The Dead Bird, by Margaret Wise Brown, as a sympathetic but unflinching children’s book about death.

The 4-C program announced a Luau for families and health care providers, to be held on Thu, June 23, 4-7pm at UMass Springfield, 1500 Main St. Join us!

Our next meeting is Wed, June 8, from 9:15-10:30am at Shriners. Please remember that we have no meetings in July & August.

Medical Home Meeting: April 13, 2016

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Linda Suprenant and Mary Summers (Family TIES of Massachusetts) greeted 42 attendees at our April meeting.  They praised the talent in the room– professionals who work with families with special needs, parents of children with special needs, and many people who wear both hats.  Family TIES of Massachusetts provides information and referral services, emotional support, and training to families. Mary reported that Family TIES gets calls every day, mostly from parents needing help dealing with school districts.  Family TIES helps parents “shorten up” what they need to say to schools to get results.

All parents need to vent sometimes, and Family TIES links parents with other families grappling with similar diagnoses.  Family TIES of Mass will reach beyond state borders to connect families with rare conditions.  Attendees of our  meeting received a 2016 edition of “the Pink Book”.  This directory of resources is downloadable at the Family TIES website, or anyone may contact the Regional Coordinators at 800-905-TIES to get a print copy.

For additional parent-to-parent support, Mary Summers recommends joining the Mass Family Voices listserv.  Parents post questions and learn from each other’s experience and expertise. Members of the listserv are encouraged to post information about conferences and workshops, and to take full advantage of the opportunity to network and advocate for improved health care.

Mary talked about the recent Visions of Community conference, sponsored annually by the Federation for Children with Special Needs (FCSN).  The conference takes place in Boston, and FCSN arranges for buses to travel from Western Massachusetts.  FCSN continually offers workshops all over the state.  For an updated list, check their schedule.

Mary finished up by reminding us about the Disability Indicator Program.  Families should contact their local emergency departments to fill out this form.  Mary encourages families to building relationships with emergency personnel before an emergency hits.  Community Fire Truck Days and other events are great opportunities to meet emergency personnel.  Families need “go bags” for emergency evacuations and “stay bags” sheltering in place.

Our next meeting will be on Wednesday, May 11 at Shriners Hospital in Springfield, MA.

Medical Home Meeting: March 9, 2016

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We welcomed 45 participants to our Medical Home Work Group meeting in March. Lauren Lynch, nurse leader at the Parent and Community Engagement Center (PACE) for Springfield Public Schools, was our first speaker. Lauren’s role is to help ensure the health and safety for kids with medical needs. School nurses are incredibly busy with distributing medications, performing sports physicals and handling many complex medical situations. PACE coordinates MASSSTART for Springfield Public Schools, helping to plan for the use of medical technology during the school day.  Lauren took questions regarding access to students’ immunization records and IEPs, especially if they transition from one Springfield school to another Springfield school.

Next, Dr. Irini Salama spoke about the use of sleep medications for special needs kids. Dr. Salama is a Community Pharmacy Resident at Walgreens.  She gave a detailed talk about the need for sleep and recommended non-pharmaceutical methods of encouraging good sleep. There are no FDA-approved medications for children, as all testing is done in adults. If a pediatrician prescribes sleep medication, this is considered “off-label” use.

Testing Drug Safety for Children

In recent years, new laws have been enacted to encourage specific testing for safety and efficacy in children. For instance, in 2012, Congress permanently reauthorized two important programs; the Best Pharmaceuticals for Children Act (BPCA) and the Pediatric Research Equity Act (PREA).

BPCA provides an incentive for drug companies to conduct pediatric studies by granting six additional months of marketing exclusivity.  PREA requires drug companies to study their products in children under certain circumstances.

Prior to implementation of these two programs, more than 80 percent of drugs approved for adults had no pediatric safety and efficacy data in their labels. Today that number has been reduced to about 50 percent.

While progress has been significant, there is still much work to be done. Off-label prescribing will continue to be part of the overall landscape of drug therapy in children until most drugs are adequately studied in children.

http://www.mentalhealth.gov/blog/2014/02/off-label-prescribing-for-children.html

Some parents consider using melatonin as a sleep aid, or use over-the-counter drugs Unisom or Benadryl. Parents are encouraged to talk with their doctors about using any sleep aid.

Lastly, we opened the floor to hear from parents who are juggling the intense needs of their families. Parents talked about establishing a team-based approach to their lives, and the importance of being validated by health care providers. Several parents stated: “I’m not a medical expert, but I’m an expert in my child.”

Parents acknowledged having a tough time asking for help, or letting go when help arrives, but they do understand the importance of their kids developing relationships with other people. Parents value talking to someone else who understands the craziness of their lives. One mother commented that she wants to tell doctors to “stop thinking for a second and just listen.”

Our next meeting will be on Wednesday, April 13 at Shriners Hospital in Springfield, MA.