Year: 2016

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.

 

Medical Home Meeting: February 10, 2016

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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!