Home > Uncategorized > Our January issue of The COFAR Voice is online

Our January issue of The COFAR Voice is online

Our January 2017 issue of The COFAR Voice newsletter is now online, with stories about:

  • The bleak outlook for the DDS budget for Fiscal 2018
  • How a family has been banned for more than a year from all contact with a young woman in the DDS system
  • Changes proposed by DDS in regulations on restraints and behavioral modification techniques that appear to make those rules more vague
  • Publication of a gritty and compelling book on the life of Donald Vitkus, a survivor of the former Belchertown State School. The book was written by Ed Orzechowski, a COFAR board member and president of the Advocacy Network.

and much more.

Our January issue is a recap of highlights and critical issues we faced in 2016. It was a year that culminated in our December 29 meeting with two key members of Governor Charlie Baker’s staff. The unusual (for us) meeting was arranged by Marty Corry, our long-time, pro bono lobbyist on Beacon Hill.

cofar-meeting-with-governors-staff2

COFAR’s December 29 meeting with key members of Governor Baker’s staff. From left are Kaitlyn Sprague, Baker’s legislative director; Ryan Coleman, Baker’s deputy chief secretary; Thomas J. Frain, COFAR Board president; Colleen M. Lutkevich, COFAR executive director; and David Kassel, COFAR communications director.

Prior to the meeting, Marty arranged a conference call in which we discussed how we would boil down the many issues we wanted to discuss into a format that could be absorbed in the half hour to 45 minutes that we expected we would have. In the end,  Kaitlyn Sprague, Baker’s legislative director, and Ryan Coleman, Baker’s deputy chief secretary, talked with us for over an hour.

Our theme for the meeting was an emphasis on the rights of individuals with developmental disabilities and their families and guardians to the fullest possible choice in care and services. We focused on three areas of concern:

  • Protecting and preserving the state-run line items in the DDS budget, particularly Line Item 5920-2010 (the state-operated group homes) and Line Item 5930-1000 (the developmental centers)
  • Ensuring that DDS disclose state-run care as an option to people seeking services, as required by federal law.  (The Home and Community Based waiver of the Medicaid Law [42 U.S.C., Section 1396] requires that intellectually disabled individuals and their guardians be informed of the available “feasible alternatives”  for care.
  • Achieving the passage of H. 1459, which proposes that a spouse or parent be presumed in probate court to be the proper person to be a guardian of a developmentally disabled or otherwise incapacitated person unless competent evidence is introduced to the contrary.

We consider H. 1459 to be a critically important rights measure for family members of people with disabilities — particularly developmental disabilities. We have found that families are routinely overruled in decisions about the care of their loved ones in probate court proceedings by medical and clinical “experts,” DDS, probate court judges, and service providers. Yet, this bill, which has no known source of opposition, dies every year in the legislative process.

Enactment of this legislation could prevent tragic situations such as the ongoing case of the Barr family in which the father and sister of Chelsea Barr, an intellectually disabled woman, have been prevented by a DDS-paid guardian from all contact with Chelsea for more than a year.

Our January newsletter touches on all of these issues. We hope you will check it out. It’s coverage you will find nowhere else.

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