COFAR blog

The theme running through our new March newsletter is the continuing struggle by families to be listened to by state policy makers, legislators, service providers, probate court judges, and the media as those families work to ensure the wellbeing and safety of their loved ones in the Department of Developmental Services system.

It is a struggle that families must engage in constantly. And as a number of the articles show, the system is often not willing to listen. Families frequently encounter significant pushback from DDS, the courts, the providers, and other quarters.

David and Ashley Barr have been subjected to an outright ban for more than two years on contact with David’s daughter who is being kept isolated in a group home in an undisclosed location. The prohibition seems to us to clearly violate DDS regulations that give clients the right to be visited.

When the Tillys filed complaints about abuse and neglect of their son in a corporate-run group home, both the provider and DDS turned against the parents instead of putting their focus on investigating and addressing their complaints. The Tillys, too, faced restrictions and then bans on visits to their son.

David (left) and Richard Buckley circa 1970

When Richard Buckley and his family tried to seek justice and get answers from DDS and the Essex County District Attorney’s Office after Richard’s brother, David, was scalded to death in a DDS group home in 2001, they got only silence. Richard is still waiting for someone to listen.

The state Legislature’s Children and Families Committee, recently held an oversight hearing to consider DDS’s responses to these types of incidents and issues. But it seemed the committee wasn’t really interested in hearing from the families either.

Verbal testimony was permitted at the committee’s January 17 hearing only from DDS commissioner Jane Ryder and from Nancy Alterio, executive director of the Disabled Persons Protection commission. To date, the co-chairs of the Children and Families Committee have not given any indication when, if ever, they will listen to the families.

But it’s not only the Children and Families Committee that does not appear to be listening. We report in the March issue on the continuing failure of the Judiciary Committee to act on a bill that would boost family rights in guardianship cases.

We believe there is a connection between these issues and the continuing priority the administration and Legislature have placed on privatizing the DDS system. The March newsletter also reports on the governor’s budget for the coming fiscal year and how it continues to short-change state-operated group homes and other state-run DDS programs.

And we have a report on our concerns about new regulations proposed by the state auditor that might weaken the Pacheco Law, a state statute that requires state agencies to demonstrate a cost savings and quality improvement prior to privatizing existing services.

We do appreciate that at least one legislator has been listening to a constituent about the problems her developmentally disabled son has had since his sheltered workshop was shut down in 2016. As we report, Representative Brian Ashe’s staff is drafting a bill that would bring back work opportunities to day programs for DDS clients who are not able to function in mainstream work environments.

Finally, we discuss the passing of two key figures in the history of care for the disabled in Massachusetts — Donald Vitkus and Edward Stefaniak. Donald was a survivor of the former Belchertown State School who went on to become a committed advocate for persons with intellectual disabilities.

Ed Stefaniak, who served as COFAR’s treasurer for many years, was instrumental in the Ricci v. Okin class action lawsuit, which resulted in major upgrades to developmental centers in the state and opened the way to community-based care.

You can find all of this and more in the newsletter, which you can access on the home page of our website at www.cofar.org. Your feedback and comments are much appreciated.