Fear and Young Minds

Trainings:

Committees:

Children’s Hospital Boston:

  • Family Advisory Committee (FAC) 1992-Present Children's Hospital Boston has the longest standing Family Advisory Committee in the country (since 1982). The Family Advisory Committee is comprised of parents and children who are treated regularly at the hospital, staff members and current and former patients. The purpose is to provide the patient and family perspective needed for successful collaboration between families and health care providers. Projects include: a creation of a lecture series, creating a Family Faculty speakers bureau and publication of resource guides on specific conditions.
  • Complex Care Service Parent Advisory Board (CCS PAB) 2005-PresentThe mission of the Complex Care Service Parent Advisory Board:enhance patient and profesional partnership, develop and centralize parent information resources and, enrich family-centered care practices at the CCS department
  • Children’s Advocacy Network (CAN) Advisory Board - 2000-PresentThe Children's Advocacy Network, or "CAN," is a group of advocates interested in the health and well being of children and families, and willing to contribute by communicating with state and federal lawmakers about child health issues.
Boston Higashi School:

  • Parent Association – Vice President 2000-Present

Forums & Focus Groups:

  • Transitional Services Department of Mental Retardation services & The ARC 2007To solicit information and feedback from families, advocates, individuals with disabilities and professionals to improve the transition process for young adults including, transition planning (ages 18-22), initial stages of transition (ages 15-18) and transition process (ages 22-24)

  • How to Navigate Interactions Among Agencies-Sponsored by the Special Needs Advocacy Network (SPAN)- 2007 Under the leadership of DSSCommissioner Harry Spence, a new collaborative venture to help schools and health/social service agencies bettercoordinate delivery of services to at-riskyouth is being developed. This partner-ship between the state's ExecutiveOffice of Health and Human Services,DSS and several statewide educationassociations, including MASC, aims tohelp high risk children succeed inschool and provide teachers and schooladministrators with tools to bettermanage behavior problems.
  • Financial Planning for Special Needs Children-Sponsored by Boston Higashi School - 2006
  • “Building Medical Homes – Children with Special Health Needs in Managed Care” presented by Dr. Richard Antonelli ~ Grand Rounds at UMASS Medical Center, Worcester, MA 2001

Speaking Engagements:

  • Massachusetts Delegates Breakfast ~ Washington DC-2003 Click Here for Article and Photo
  • Children’s Hospital Boston Advocacy Network Breakfast -2000Invited as a speaker from the CAN to speak about all of the positive experiences at Children's Hospital Boston including advocating for increased state funding to hospitals that are pure pediatric institutions who receive less per patient
  • State House Press Conference ~ Senate President Thomas Birmingham2000 Was invited by former Senate President Thomas Birmingham to speak to the issues of health care and its affects on home care and the lack of support to the care-givers in an effort to secure 10.8 million dollars in Medicaid funding to Children’s Hospital Boston

Other Advocacy 1994-Present:

Commonwealth of Massachusetts:

Have written numerous letters across the Commonwealth to advocate for legislative policy change, as well as advocating for increased budgets and services for the most vulnerable children in need of change.

Division of Health Care Finance & Policy:

Was invited and have testified at over 25 Medicaid Hearings to:

  • Increase Private Duty Nursing (PDN) wages
  • Participated in policy change:

-redefining the Private Duty Nursing defininition of 'skilled nursing'

-what criteria qualify a child for services

Community Case Management (CCM):

Have worked closely with this division of Medicaid services medically complex children who qualify for Kaileigh Mulligan program and Mass Commission for the Blind (MCB)