COFAR blog

We believe individuals with intellectual and developmental disabilities in Massachusetts have a right under federal law to care at the Wrentham and Hogan Intermediate Care Facilities (ICFs).

They also have a right to work opportunities in their day programs and other congregate care settings.

Those rights are under continued assault. (See here and here.)

As a result, we are contacting members of the Massachusetts delegation in Congress and key members of the state Legislature, and are asking them to relay information about those rights to policymakers at the federal and state levels.

It seems to us that most lawmakers and policymakers do not recognize the wide range of functioning and needs among people with intellectual and developmental disabilities, or the importance of giving this population a full continuum of choice. One size does not fit all.

DDS phasing out state-run residential care

The Massachusetts Department of Developmental Services (DDS) is allowing the state’s two remaining ICFs — the Wrentham Developmental Center and the Hogan Regional Center — to slowly die by attrition. We believe the eventual closures of these essential backstops for care of the state’s most profoundly disabled residents will be disastrous.

So far, we have met online with legislative staff of U.S. Senators Elizabeth Warren and Ed Markey, and of Representatives James McGovern, Seth Moulton, and Catherine Clark, and imparted that message. We still have six additional members to meet with in the congressional delegation.

Next week, we will also meet online with staff of state Senator Robyn Kennedy, the new Senate chair of the Legislature’s Children, Families, and Persons with Disabilities Committee. We hope to discuss these issues with Senator Kennedy herself, at some point, and will try to schedule a meeting soon with state Representative Jay Livingstone, House chair of the Committee, and his staff.

We want these legislators to know that DDS has failed to inform families and guardians of individuals in the DDS system of the existence of the Wrentham and Hogan Centers, and, with few exceptions, has denied their requests to place their loved ones in those facilities. The Department is also failing to inform people of the existence of its network of state-operated group homes.

What DDS has done has been to attempt to place virtually all persons waiting for residential services in the much larger network of corporate provider-run group homes that the Department funds.

That policy was explicitly confirmed in a decision earlier this month in which DDS Commissioner Jane Ryder upheld the denial of an appeal by the parents of an intellectually disabled man to place their son at Wrentham.

In that case, the parents presented evidence that their son has received inadequate services in his provider-run group home. He is also facing eviction from the residence, and had been abused by staff employed by his group home and day program provider. But a DDS-appointed hearing officer adopted the Department’s position that “federal law does not entitle the (son) to admission to an Intermediate Care Facility at WDC (the Wrentham Center).”

DDS policy runs counter to federal rules

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)” (my emphasis). The son’s group home in the appeal case is run by a corporate DDS provider that is partly federally funded under the HCBS program.

Unfortunately, in his decision, the hearing officer confirmed that DDS’s policy is the opposite of the federally prescribed policy that states may not limit access to ICFs. The hearing officer stated that he agreed with the testimony of a DDS regional director in the appeal hearing that, “DDS avoids institutionalization at the ICFs except in cases where there is a health or safety risk to the individual or others, and generally, when all other community-based options have been exhausted.”

In our view, however, the federal Medicaid law and its regulations confer the right to the choice of ICF care to individuals and their families and guardians.

DDS, like many advocates of deinstitutionalization of care for people with intellectual and developmental disabilities, has also regularly misinterpreted the landmark Olmstead v. L.C. Supreme Court decision, which also implies a right to ICF care for those who desire it.

Federal ICF legislation that we support and oppose

In our meetings, we are urging lawmakers in Congress to oppose pending bills that would expand funding to largely privatized HCBS system, but would not direct similar funding to ICFs.

We oppose:

The Latonya Reeves Freedom Act of 2023

• H.R. 2708 (Steve Cohen, D-TN) https://www.congress.gov/bill/118th-congress/house-bill/2708
• S.1193 (Michael Bennett, D-CO) https://www.congress.gov/bill/118th-congress/senate-bill/1193

As Hugo Dwyer, executive director of the VOR, our national affiliate explained, this legislation was proposed by ADAPT, an organization that has “repeatedly called for the elimination of the ICF model.” Dwyer stated that VOR supports “keeping all services available and allowing individuals and their families to choose what is right for them.”

Dwyer noted that these latter bills would increase federal Medicaid funding for direct-care wages, which we and VOR support. But those wage increases would be in HCBS settings only, leaving out the ICFs.

We support:

Recognizing the Role of Direct Support Professionals Act

Dwyer said these bills would help raise wages and training of direct-care staff in all settings, including ICFs.

Work opportunities legislation

With regard to work opportunities for people with intellectual and developmental disabilities, two pending bills in Congress would encourage such opportunities:

We support:

The Restoration of Employment Act would give an individual a choice whether to accept employment at a subminimum wage. (This blog post explains why the subminimum wage is needed by people who are unable to compete in the mainstream workforce.)

The Workplace Choice Act states that a program setting in which an intellectually disabled individual is able to interact with “colleagues, vendors, customers, and superiors…” would be considered a “competitive, integrated employment” setting. This would allow people who can’t compete in the mainstream workforce to be provided with work activities in their day programs.

We oppose: