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!