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Our priorities for the 2025-2026 legislative session

The 2025-2026 session of the Massachusetts Legislature began on January 1 of this year. So we are taking this opportunity to announce our priorities for this 194th 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 Developmental Center, the Hogan Regional Center and state-operated group homes as options for persons with intellectual and developmental disabilities (I/DD) who are 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 2024 – a 50% drop. The census at Hogan dropped from 159 in Fiscal 2011 to 88 in Fiscal 2024 – a 45% drop.

Source: DDS

From Fiscal 2008 to 2021, the census in the 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 acknowledged 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 a right to 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.

Adequate funding needed for state-run facilities in the Fiscal Year 2026 budget

In order to preserve ICFs and state-operated group homes, state funding for these settings must be adequate. We are calling for the following increases in the state budget for the coming fiscal year:

  1. DDS ICF line item (5930-1000). Based on the federal Bureau of Labor Statistics inflation rate of 3.1% in the Boston Metropolitan Area as of November 2024, we are requesting a $3.9 million increase in this line item, from $124,809,632 in the current fiscal year, to $128,678,731 in Fiscal Year 2026.

The ICF line item decreased by 40% between Fiscal 2012 and 2025 when adjusted for inflation.*

  1. DDS state-operated group home line item (5920-2010). We are requesting a $10.3 million increase in this line item, from $330,698,351 to $340,950,000 in Fiscal 2026.

The state-operated group home line item increased by 47.6% between Fiscal 2012 and 2025 when adjusted for inflation. However, that compares with an increase during that period of 65% in the corporate-provider residential line item (5920-2000). The corporate community-residential line item was $1.7 billion in Fiscal 2025.

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 will request that that condition be added to the language in the line item.

Regarding 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, as noted above, closing institutions was not the intent of the Olmstead decision. 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 annual state budget 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.

Regarding the second instance in which we are seeking a language change, the three conditions listed in the annual state budget for discharging clients to the community are:

  1. The client is deemed clinically suited for a more integrated setting;
  2. Community residential service capacity and resources available are sufficient to provide each client with an equal or improved level of service; and
  3. 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…” 

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 will request that it be included.

Choice needed in residential services

DDS holds considerable authority regarding residential placements. Families cannot change residential providers without DDS approval. We would support legislation creating 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 needed

Reform is needed of the guardianship system in probate court, which traps many families into 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.

Stan’s 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, the DDS commissioner appoints a hearing officer of its choice to decide the case.  After the hearing officer decides the appeal, the 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 the 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.

An individual whose name is listed in the Registry can no longer work in any DDS-funded care setting.

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 include 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 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

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 only with adequate safeguards, particularly safeguards against the potential marginalization of family members.

*From the Massachusetts Budget & Policy Center’s online Budge Browser at https://massbudget.org/budget-browser/.

 

  1. Unknown's avatar
    Anonymous
    January 9, 2025 at 12:53 pm

    Another key piece of the argument regarding protecting access to the ICFs is that, should the ICFs close, there is no longer a nursing facility level of care available to those with intellectual disabilities. Standard nursing facilities and rehabs will not take these patients.

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  2. Unknown's avatar
    Anonymous
    January 9, 2025 at 1:26 pm

    This is a very good agenda, but we need to get more people on board with this. We can do this by partnering with other organizations such as the National Council on Severe Autism. We need them to endorse our agenda, and we need them to alert their Massachusetts members that this is our agenda.

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  3. Unknown's avatar
    Anonymous
    January 9, 2025 at 7:03 pm

    i have worked for dds for many years and have been seeing nothing good happening.they are setting us all up to fail. it is very discouraging for a person who has spent her life taking care of the disabled to see the administration do everything in their power to make it look like its a failure.when they are not training staff properly anymore and just have them sign papers instead stating they were trained, when alot of the staff cannot read whats in front of them, just to save the state if something happens. 20 years ago it was an awesome place to work, now not so much.the residents are not the main focus anymore.it is heart breaking to have to watch this happen when you know its certain individuals in administration setting us all up to fail, instead of doing right by the people who live there. There are so many open beds but yet they keep taking the blocks for staff off so it looks like we dont need any. I feel for all of the families that have nowhere for their loved ones to go , when the two icfs could be a choice and train staff properly again so the residents can feel like they are being taken care of by family not just a worker again, to protect and honor them.

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  4. Unknown's avatar
    Anonymous
    January 10, 2025 at 6:28 pm

    I wonder if we should add an ARC priority that I think would be very helpful to people. That would be to enable guardians to use the “adult foster care,” Medicaid benefit that now is only available for non-guardians to be paid for in-home care of persons with disability, above and beyond ordinary family care, and at a professional rate if qualified. In a two-parent home (where one can give up guardianship), or with siblings, this provides financial help and some clinical support. But a single parent guardian with a loved-one at home cannot access this benefit without finding an outside guardian, with all the risks we know that can bring.

    Mark Zanger

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  5. Unknown's avatar
    Anonymous
    January 14, 2025 at 11:59 am

    Wrentham Developmental Center has over 400 acres of land. It can be made into a beautiful community with not only housing but an activity center (pool, basketball, bowling), shopping and restaurants for all to enjoy. If we could keep at least 60% of the housing kept in perpetuity for I/IDD and the remainder for families and the general public it would be perfect. This is my dream location for not only my son but my husband and I as well. Other states have created housing like this and we can as well! Let’s do this!! – Elaine, Norfolk

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  6. Unknown's avatar
    Anonymous
    January 27, 2025 at 5:04 pm

    I would welcome the idea of expanding Wrentham and Hogan including opening it up to housing for families who could then provide support, oversight and improved outcomes for those with significant ID/DD/ASD.

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