COFAR blog

More than a month ago, we brought a case involving the apparent neglect of a resident of a provider-run group home and the intimidation of his family to the attention of the co-chairs of the Legislature’s Children, Families, and Persons with Disabilities Committee.

Then on March 5, I forwarded a follow-up post about the case to the committee co-chairs, Senator Robyn Kennedy and Representative Jay Livingstone.

We think the case illustrates a disturbing and ongoing state of dysfunction in the state’s system of care of persons with intellectual and developmental disabilities (I/DD). It seems that the Department of Developmental Services (DDS) is doing little or nothing to change a culture in the system that appears to foster this level of neglect and intimidation.

As our posts reported, Rachel Surner informed the upper management of her son’s corporate provider-run group home in June 2022 of an incident in which the staff neglected to give her son Ian his portable urinal. Ian, 31, has spastic quadriplegia, a condition that has left him with the limited ability to move only his arms.

Having received distress texts on her phone from her son, Rachel had to go to the home herself at 6:45 in the morning to retrieve his urinal from the floor next to his bed.

Then in January of this year, the same thing happened again when the same staff member again allegedly neglected to give Ian his urinal. The response of the provider, the Justice Resource Institute (JRI), however, was to blame Rachel for allegedly being “disruptive” in the home, and to impose severe restrictions on her visits to her son.

DDS stated that Rachel and her husband would either have to comply with those restrictions or remove Ian from the home.

Rachel had complained about numerous other problems in the home as well, including a failure to regularly shower or toilet Ian, and a failure to involve him in community activities.

On February 12, I talked to a member of Senator Kennedy’s staff at a meeting she held with constituents in my hometown of Berlin, MA, and gave her information about Ian’s case and that of another mother whose son was also severely neglected in a provider-run group home.

In that second case, the son had suffered extreme dental decay, weight loss, removal of prescribed medications, and unexplained injuries. The aide said she would bring the cases to Senator Kennedy’s attention.

Not having heard anything more by the beginning of this month, I stated in my March 5 follow-up message to both Kennedy and Livingstone and their staffs that we would be happy to arrange for our members to provide them with further information about the ongoing problem of abuse and intimidation in the DDS system.

Even The Boston Globe has written about this culture, noting earlier this year that when parents of children with autism have complained about abuse and neglect in DDS-funded group homes, they have been labeled as “too demanding.” And a number of parents who spoke to the newspaper requested anonymity because “they were afraid that state officials or providers would retaliate against them.”

Obligation to change the DDS culture and system

We think legislators have an obligation to help change a culture within DDS that appears to perpetuate poor care and intimidation of families in the provider-run group home system. As co-chairs of the Children and Families Committee, Kennedy and Livingstone are in a position to exert pressure on DDS to change that culture.

Last fall, we first met with both Senator Kennedy and Representative Livingstone on Zoom to make a case for the preservation of state-run residential services. In our view, state-run services are more accountable to both families and taxpayers than are corporate provider-run services.

Levels of abuse and neglect in the Wrentham and Hogan facilities are significantly lower than in the provider-run group home system, based on a review of state data that we undertook.

On a per-client basis, state-operated group homes were well below average in terms of both substantiated allegations of abuse and criminal referrals between Fiscal 2010 and 2019. Also, we found that the state-run Wrentham and Hogan Intermediate Care facilities were at or near the bottom of the list of total providers in those measures.

Yet, the Wrentham and Hogan Centers and the state-run group homes are ultimately facing closure because a succession of administrations has largely closed their doors to new admissions.

Last fall, Senator Kennedy said she would help us arrange a meeting with Governor Healey in which we would raise these concerns. We urge people to email Kennedy’s and Livingstone’s offices, and forward a link to this blog post.

You can email them at Robyn.Kennedy@masenate.gov and Jay.Livingstone@mahouse.gov.

Remind them that it is time to change the culture in DDS and to take concrete steps, including setting up a meeting with the governor, to preserve state-run services in the DDS system.

Thanks!