COFAR priorities for the 2025-2026 legislative session

Admissions should be opened to the ICFs and state-operated group homes

We are seeking the filing and passage of legislation that would require the Department of Developmental Services (DDS) to offer the Wrentham and Hogan Centers and state-operated group homes as options for those seeking residential placements in Massachusetts.

Unless the administration agrees to open those facilities to new admissions, they will eventually close. DDS data show the number of residents or the census at both the Wrentham Developmental Center and Hogan Regional Center continued to drop from Fiscal Years 2019 through 2024.

The census at Wrentham dropped from 323 in Fiscal 2015 to 159 in Fiscal 2025 – a 50% drop. The census at Hogan dropped from 159 in Fiscal 2011 to 88 in Fiscal 2024 – a 45% drop.

From Fiscal 2008 to 2021, the census in the smaller state-run group home system dropped from 1,059 to 1,023 – a 3.4% decrease.

Meanwhile, the census in the state’s much larger network of privatized group homes continued to climb during that same period, rising from 6,677 to 8,290 — a 24% increase.

Currently, the privatized group home system in Massachusetts is providing substandard care even as thousands of individuals continue to wait for residential placements.

Even the Arc of Massachusetts, which has pushed for the closures of all remaining ICFs, has acknowledge a “systemic failure” in the largely privatized DDS system in which thousands of persons with I/DD are unable to get services.

State-run residential facilities, which have better trained and higher paid staff, are vital to the fabric of care in the DDS system. As Olmstead v. L.C., the landmark 1999 U.S. Supreme Court decision, recognized, there is a segment of the population with I/DD that cannot benefit from and does not desire community-based care. ICFs, in particular, must meet stringent federal standards for care that make them uniquely appropriate settings for persons with the most profound levels of disability and medical issues.

Yet, DDS does not inform individuals and families seeking residential placements that these state-run facilities even exist. During the past two years, we have reported on two admissions to ICFs in Massachusetts (here and here), but those admissions have been the exceptions. In at least two instances in the past two years, families have been unsuccessful in efforts to win placements for their loved ones at the Wrentham Center.

That policy decision by DDS to discourage or block new admissions guarantees that the number of residents in state-run residential care will continue to drop, and that the ICFs, in particular, will eventually be closed.

Right to ICF care

Despite DDS’s policy, the federal Medicaid law and its regulations confer the right to the choice of ICF care to individuals and their families and guardians. 

As Medicaid.gov, the federal government’s official Medicaid website, explains, “States may not limit access to ICF/IID service, or make it subject to waiting lists, as they may for Home and Community Based Services (HCBS)” (our emphasis).

Open ICF campuses to family housing

In addition to our proposal for legislation to open the ICFs to new admissions, we are calling for legislation that would establish housing on the Wrentham and Hogan campuses for elderly family members of the residents of the facilities.

Such housing would allow families to live in proximity to their loved ones in DDS care and to establish caring communities. It would provide peace of mind to ageing parents and siblings who may find it increasingly difficult to make long trips to visit their loved ones in the facilities.

ICF budget language should be changed

We are seeking two modifications to the language that is included every year in the ICF line item in the state budget (5930-1000). In one instance, the language mistakenly implies that the U.S. Supreme Court ordered the closures of institutions for persons with developmental disabilities.

In the second instance, the annual budget language lists three conditions for discharging clients from ICFs to the community, but leaves out one of the key conditions in Olmstead, which is that the client or their guardian does not oppose the discharge. We would request that that condition be added to the language in the line item.

1. In the first instance, the budget language refers to Olmstead v. L.C., the Supreme Court’s landmark 1999 decision, which considered a petition by two residents of an institution in Georgia to be moved to community-based care.

The budget language states that DDS must report yearly to the House and Senate Ways and Means Committees on “all efforts to comply with …Olmstead…and… the steps taken to consolidate or close an ICF…” (our emphasis)

However, closing institutions was not the intent of the Olmstead decision, which was written by the late Justice Ruth Bader Ginsburg. The decision explicitly states that federal law — specifically the Americans with Disabilities Act (ADA) — does not require deinstitutionalization for those who don’t desire it.

We believe the language should be changed to state: “…the steps taken to consolidate or close an ICF and the steps taken to inform families of the choices available for residential care including ICF care.”

We are concerned that the current line item language could allow the administration to justify continuing to underfund the line item, and possibly to seek the eventual closures of the Wrentham and Hogan centers.

2. The three conditions listed in the annual budget language for discharging clients to the community are:

(i) the client is deemed clinically suited for a more integrated setting;

(ii) community residential service capacity and resources available are sufficient to provide each client with an equal or improved level of service; and

(iii) the cost to the commonwealth of serving the client in the community is less than or equal to the cost of serving the client in an ICF/IID…” (my emphasis)

The first two of those conditions do match conditions listed in the Olmstead decision for allowing the discharge of clients to the community. However, there is a further condition in Olmstead, which is that such a discharge is “not opposed” by the client or their guardian. That condition is not included in the budget language, and we think it should be included.

Choice in residential services

DDS holds considerable authority regarding residential placements. Families cannot change residential providers without DDS approval. We would support a voucher system, which would allow family choice, create competition, and improve the quality of care. This would also help families who need to move to other parts of the state for work or family reasons.

Guardianship reform

Reform is needed of the guardianship system in probate court, which traps many families in losing disputes with DDS.

We would support a guardianship reform bill that would provide for free legal representation for family members and that would presume that parents or siblings would be suitable guardians in petitioning for guardianships.

We have long supported proposed legislation that would presume that parents, in particular, would be suitable guardians of their adult children with I/DD.  This legislation was first proposed by the late Stan McDonald, who had sought unsuccessfully to regain guardianship of his intellectually disabled son.

The bill, which was most recently filed in the previous legislative session, has never gotten out of the Judiciary Committee, however.

Independent DDS appeals process

The appeals process that persons must follow regarding Individual Support Plans (ISPs) contains a serious conflict of interest in that DDS controls the entire process. 

When a family member or guardian of a DDS client appeals the client’s ISP, DDS appoints a hearing officer of its choice to decide the case.  After the hearing officer decides, the DDS commissioner can reverse the decision. We have reported on at least two instances in the past year and a half in which this appeals process has been marred by apparent bias on the part of the DDS-selected hearing officer against appellants.

We would support a bill, which would place the entire ISP appeals process under the control of the independent state Division of Administrative Law Appeals (DALA).

DPPC Abuser Registry reform

Last year, we reported that in only a minority of the cases in which the Disabled Persons Protection Commission (DPPC) affirmed initial substantiations of abuse allegations against care providers did the agency conclude that those persons’ names should be placed in the DPPC’s Abuser Registry.

Following our report, state Senator Patrick O’Connor, the original sponsor of the legislation that created the Registry, said he was worried by our findings and that it “may be time to fine-tune” the law.

We are calling for changes in the law that including requiring the DPPC to consider several factors listed in the regulations for determining whether a care provider against whom abuse has been substantiated is really is fit to continue to provide services. Right now, the regulations say only that the DPPC “may” consider factors such as previous incidents of abuse and the provider’s previous work history.

Also, we believe the regulations should explicitly require that the DPPC place care providers in the Registry in all cases in which the agency has affirmed allegations of intentional physical or sexual abuse.

Funding to corporate providers must result in higher wages for direct-care workers

The increases in state funding to the providers over the past decade have resulted in continuing increases in the pay of the provider executives. The increased state funding, however, hasn’t been passed through by the providers to their direct care employees.

We are calling for legislation that would raise the pay of direct-care workers employed by DDS corporate providers to $25 per hour.

Work opportunities needed in congregate care settings

In the wake of the closures of all sheltered workshop programs in Massachusetts as of 2016, we are calling for legislation authorizing the introduction of work opportunities for individuals in community-based day programs.

The last time such legislation was proposed appears to have been in 2019 in the form of then H.88. That legislation, however, did not make it out of committee.

Safeguards and corrections needed in Supported Decision Making legislation

During the last legislative session, identical Supported Decision Making (SDM) bills came close to final enactment, but the bills died in the House Rules and House Ways and Means Committees respectively at the end of the session. We had raised numerous concerns about the bills with those and a number of other legislative committees.We expect the same SDM legislation will be refiled in the current session.

We intend to raise similar objections to the bills unless they are redrafted to correct serious flaws.SDM reflects a growing movement to restrict guardianships of persons with I/DD and replace those guardians with “networks” of more informal advisors. While SDM can hold promise for some high-functioning individuals, and we would support its adoption with adequate safeguards, particularly safeguards against the potential marginalization of family members.

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.