Medical Home Meeting: April 13, 2016

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.