The following is a list of key issues and concerns we have raised regarding the care of persons in the Department of Developmental Services (DDS) system. Many of the details below relate to actions we’ve taken over the past several years and to bills filed in the current and recent sessions of the state Legislature.
Unchecked privatization and imbalance in funding of corporate-provider versus state-run DDS programs
COFAR is continuing to raise concerns with legislators regarding the ongoing under-funding by a succession of administrations and the Legislature of state-run DDS programs. This has led to unchecked privatization of programs and services.
While the state-operated group homes would get a 6.17% increase in funding under the governor’s budget for Fiscal Year 2023, the numbers don’t look as good for the developmental centers, community-based day programs, autism services, and transportation programs.
According to the governor’s proposal, state-operated group homes would receive $256 million in Fiscal 2023. That would amount to an increase of $14.8 million from the current-year appropriation. But even that increase is less than the current inflation rate for New England. We are urging a minimum increase in state-run programs at least equal to the inflation rate.
Moreover, even with that increase, the state-operated residences would have a long way to go to catch up to the percentage increases in funding for provider-run group homes over the past decade.
Developmental centers, day programs, and transportation continue to see cuts
The Wrentham and Hogan Developmental Centers line item would receive $109.1 million under the governor’s Fiscal 2023 budget. That would amount to an increase of $5.4 million, or 5.2%. That is less than the minimum $6.3 million increase needed to keep pace with inflation.
The developmental center or Intermediate Care Facility (ICF) line item has, moreover, been cut by $68.4 million, or 39%, over the past decade, when adjusted for inflation.
As we’ve frequently noted, the major increases in funding to the provider-based line item since FY12 have enabled the corporate providers in the DDS system to garner sizable surplus revenues in the intervening years. Those surpluses have enabled the providers to provide yearly increases in executive salaries, but have not translated into living wages for direct-care workers employed by them.
The graph below details the differences in priorities assigned to the three main DDS residential line items since Fiscal 2012.
A $25-per-hour minimum wage for direct care workers
With low pay a recognized cause of staffing shortages now endemic to the the state’s human services system, we are concerned about an apparent lack of urgency and effort by the administration and the Legislature in raising direct care worker pay.
Meanwhile, as the staffing shortage problem drags on month after month, a lack of timely action by lawmakers and the administration to address it is especially frustrating given the state’s strong financial condition and projected surplus revenues.
Over the past several months, the Baker administration has distributed federal funding for only a one-time, 10% increase in wages under last year’s American Rescue Plan Act (ARPA). But those wage increases, which have been paid by at least some providers to workers in the form of bonuses, are not the basis of a permanent increase in their pay.
Guardianship rights for families
We are concerned about a number of cases in which DDS and the probate court system have acted to limit guardianship rights of family members of DDS clients.
Among the people we are advocating for is Cindy Alemesis. DDS is continuing an effort to remove Cindy as her son’s co-guardian even though Cindy acted to save her son’s life in 2018. A hearing in Middlesex Probate Court on DDS’s guardianship removal petition against Cindy has been scheduled for May 5, 2022.
Cindy says that in addition to trying to remove her as her son’s co-guardian, the state is imposing unfair and punitive restrictions on her son’s contact with the community and with his church. She says the church, which she also attends, has been a “lifeline” for her 30-year-old son Nick.
We have also reported on the case of Valerie Loveland, who is co-guardian of her 24-year-old son who is non-verbal and needs 24-hour care. He has been a resident for the past six years in three separate group homes on Cape Cod run by the May Institute, a corporate provider funded by the Department of Developmental Services (DDS).
A motion to limit Valerie’s guardianship rights was filed in early March in Barnstable County Probate Court by her son’s other co-guardian – an attorney who is employed by DDS. In addition, eviction proceedings were launched against Valerie in December 2021 by her landlord, Lake Street Limited Partnership, and its managing agent, The Community Builders, Inc., a nonprofit corporation. The eviction notice is based on what appears to be a technical violation of the lease for her Chatham apartment.
Valerie said she has never failed to pay her rent on time. The issue raised by the landlord in the eviction notice is that Valerie is a full-time college student.
Families lack rights and protections in the DDS-probate court system
COFAR has found that DDS often sides with corporate providers when families raise abuse or care issues. We regularly advocate on behalf of those family members and guardians.
Probate judges often bypass family members and select DDS-recommended attorneys as guardians. To remedy that, COFAR is supporting H.1733, a bill that would require probate judges to presume that parents of DDS clients are the proper guardians for them.The bill, however, has never gotten out of the Judiciary Committee.
Concerns about Supported Decision Making
COFAR has raised concerns with key legislators about a bill (S.124) to introduce Supported Decision-Making (SDM), which would potentially replace individual guardians with teams or “network supporters.” The legislation appears to have the same problems we identified in the 2019 version of the bill.
Under SDM, the network supporters would enter into written agreements with disabled individuals to help them make decisions about their care, finances, living arrangements and other areas. But the bill skirts the question whether everyone is really capable of making their own decisions in those very important areas.
Data on COVID in the DDS system
For the past two years, COFAR has tracked the administration’s actions in response to the introduction of COVID-19 infections in the DDS residential system. But information on vaccinations of residents and staff, and prior to that on testing for COVID, has been difficult to obtain.
Starting in November 2020, weekly state facility reports had begun showing results of testing on provider staff in all EOHHS human services group homes. But not only were those reports not broken down by individual agency, such as DDS, the reports started combining provider-run group home results with state-run group homes.
Abuse and Neglect
In December 2019, we published an analysis on our blogsite of the outcomes of more than 14,000 abuse complaints between Fiscal Year 2010 and 2019 involving DDS clients in both provider-run and state-run facilities.
On a per-client basis, COFAR’s analysis showed that state-run group homes and developmental centers were well below average in their numbers of substantiated cases of abuse.
We have strongly supported Tommy's Bill, which was filed on behalf of Maureen Shea, whose son died of an epileptic seizure after his monitoring device failed to alert the staff of his residence of a problem. This bill (S. 140) has also been referred to the Health Care Financing Committee.
We've supported this bill in the past. It specifies that when a disabled individual is discharged from a hospital to a residential group home, a licensed medical professional from the group home must review and acknowledge the full requirements of the hospital discharge plan with respect to life support equipment. The medical professional must then advise the group home staff about those requirements.
Work opportunities for individuals in Community Based Day Programs
In late 2019, COFAR advocated for H.88, which would require that work activities be provided in community-based day programs to all clients who want that choice. Unfortunately, the bill was gutted and language establishing a commission on DDS issues was substituted.
Work opportunities for persons with I/DD has been a serious and growing problem since the closures of all sheltered workshops in the state in 2016.
We recently reported that despite continuing clams by the state that people with developmental disabilities are finding jobs and thriving in the mainstream workforce, newly provided state data show a steep drop in “supported” or “integrated employment” for those persons as of early 2020.
Other related recommendations regarding the DDS system
Increased resources for the DPPC and investment of the agency with sole authority to investigate abuse and neglect.
Changes to the DPPC’s regulations to ensure public disclosure of its completed reports.
Increased financial oversight of the corporate provider system and the DDS/probate guardianship system.
The provision of free legal assistance to family members and guardians who been barred from contact with their loved ones in the DDS system or who have otherwise faced retaliation from the agency or from providers.
The provision of free legal assistance to family members whose guardianships are challenged by DDS.
Improvements in the inspection and licensing process of corporate-operated group homes.