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DDS wrongly claims federal law does not give individuals the choice of either the Wrentham or Hogan Centers
In a June 5 legal brief, the Department of Developmental Services (DDS) argues that federal law does not give persons with intellectual or developmental disabilities (I/DD) the right to placement at either the Wrentham Developmental Center or the Hogan Regional Center.
We think the Department’s argument in the brief misrepresents federal law, and reflects an unfounded bias among policy makers in Massachusetts against Intermediate Care Facilities (ICFs). The Wrentham and Hogan centers are the last remaining, congregate ICFs in the state.
As we argue below, we also think the DDS brief wrongly assumes that group homes necessarily provide their residents with more integration with the surrounding community than do ICFs. That assumption is based on an outdated perception of the way ICFs operate today, and an overly rosy perception of the community-based system.
As we have reported, a succession of administrations has allowed the residential population or census at the Wrentham and Hogan centers to decline. This decline is due to DDS’s apparent policies of denying admission to the ICFs to most persons who ask for it, and failing to inform persons looking for placements that those facilities exist as residential options.
The DDS brief appears to confirm those policies in stating 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.
The DDS legal brief was submitted in response to an appeal to the Department, which was filed by the mother of a man with I/DD who was denied admission to the Wrentham Center. We are withholding the names of the mother and her son, at the mother’s request.
Federal Medicaid law requires a choice of either an ICF or “waiver services”
In our view, the DDS policies regarding admissions to ICFs do not comply with the federal Medicaid law and regulations. Those rules require that ICFs be offered as a choice to all persons whose intellectual disability makes them eligible for care under the Medicaid Home and Community-based Services (HCBS) waiver program.
Persons who are found to be eligible for HCBS waiver care have been found to meet the eligibility requirements for ICF-level care.
The HCBS waiver was established to allow states to develop group homes as alternatives to institutional care. However, the Medicaid statute did not abolish institutional or ICF care. In fact, the statute states that if a state does include ICFs in its “State Medicaid Plan,” as Massachusetts does, the state must provide that:
…all individuals wishing to make application for medical assistance under the (state) plan shall have the opportunity to do so, and that such assistance shall be furnished with reasonable promptness to all eligible individuals. [42 U.S.C. § 1396a(a)(8)]
Federal Medicaid regulations state explicitly that individuals seeking care, and their families and guardians, should be “given the choice of either institutional or home and community-based services. [42 C.F.R. § 441.302(d)] (My emphasis.)
The DDS brief, therefore, wrongly asserts that, “Federal law does not entitle the Appellant (the mother’s son) to admission to an Intermediate Care Facility.”
DDS brief wrongly assumes ICF settings are necessarily more restrictive than community-based group homes
The DDS brief also states, as a reason for denying admission to the Wrentham Center to the mother’s son in this case, that state regulations require the Department to place individuals “in the least restrictive and most community integrated setting possible.” According to the brief, the son currently lives in “a less restrictive community-based setting” than he would in an ICF such as the Wrentham Center.
But a statement that a community-based setting is necessarily less restrictive than an ICF is an ideological position that ignores the evidence.
This past Sunday, for example, I attended an annual birthday party for a DDS client who lives in a provider-run group home in Northborough. The home is located on a busy road. There is no sidewalk along the road, and only one other home in the area is faintly visible from the client’s residence.
There is no opportunity for the client to walk in the neighborhood around the residence, whereas residents at the Hogan and Wrentham Centers have access to acres of walking and recreational areas on the facility campuses.
While staff in the client’s Northborough group home do take him on trips to restaurants and other community events, those kinds of events are also provided, as our Board member Mitchell Sikora has recently described, to residents of the Wrentham and the Hogan Centers.
We’ve also written many times about restrictions imposed by DDS on visits and other types of contact by family members with residents of provider-run group homes.
The presumption that ICFs are necessarily more restrictive than group homes is based on an outdated characterization of facilities such as the Wrentham and Hogan Centers. Like many proponents of the privatization of DDS services, DDS chooses not to recognize the major improvements in congregate care and conditions that occurred, starting in the 1980s, in Massachusetts and other states as a result of both federal litigation and standards imposed by the Medicate statute.
DDS brief takes a we-know-best position
In addition to the questionable assumption it makes with regard to the level of restrictiveness of ICF care, the DDS brief also appears to accept, without question, that care and conditions in provider-run group homes are uniformly good.
The brief noted, for instance, that a DDS regional director had testified during a hearing in the case that the mother’s son “would not likely receive a greater benefit from admission to the ICF than he receives in the community.”
According to the brief, the son:
…has been successfully supported in the community for 13 years, his annual ISP (Individual Support Plan) assessments indicate that he continues to make progress toward his ISP goals, and he is well served by his community-based services and supports.
Conditions are not better in the community
Again, the DDS statements about what is best for an individual appear to be based on an ideological position that community-based placement options are always appropriate and available. In this case, however, the mother had sought to place her son at the Wrentham Center only after his group home provider had stated its intention to evict him from the residence.
The mother told us that in a meeting last year with DDS and provider officials, a provider manager cited two reasons for moving to evict her son. One was that her son had had a toileting accident on the deck of the group home, and that the mother had allegedly failed to notify the staff of the accident. The mother said the second reason was that she had posted a message on Facebook that was allegedly critical of the group home staff.
With regard to the toileting accident, the mother said she had taken her son back to the house after a planned outing, and that her son had the accident because the home was locked at the time and no one was there to let him in. Her son has Crohn’s Disease. The mother also said her son had also been physically abused on at least two occasions at the provider’s day habilitation facility.
Meanwhile, corporate group home and day program providers themselves in Massachusetts acknowledge that care and conditions in the DDS community-based system have been getting steadily worse.
In our view, all of this calls into question DDS’s assertion in the brief that the son in this case has been “successfully supported in the community for 13 years.”
DDS misrepresents the Olmstead Supreme Court decision
Finally, the DDS brief employs a common misrepresentation of the U.S. Supreme Court’s 1999 Olmstead v. L.C. decision with regard to institutional care. The brief wrongly implies that the Court held that in all cases, individuals should be placed in community-based rather than institutional settings. In fact, the Court held in Olmstead that three conditions must be met in order for persons to be placed in community-based care:
- The State’s treatment professionals determine that community-based placement is appropriate,
- The “affected persons” do not oppose such placement, and
- The community placement can be reasonably accommodated, taking into account the resources available to the state and the needs of others with mental disabilities.
The DDS brief, in arguing that Olmstead does not support the placement of the woman’s son at the Wrentham Center, cited only the first of the three conditions above. But all three conditions must hold under Olmstead in order to justify a placement in the community; and, clearly, the second condition doesn’t hold in this case — the affected persons do oppose continued placement in the community-based system.
In sum, the DDS closing brief in this case appears to provide the clearest indication we’ve seen of DDS’s reasoning and its policies with regard to admissions to the remaining ICFs in Massachusetts. It is clear to us that that reasoning and those policies are based on misinterpretations both of federal law and the history of congregate care for persons with I/DD in this state.
Unless the case can be made to key legislators and policy makers in Massachusetts that all family members and guardians should have the right to choose ICFs as residential options for their loved ones, the Wrentham and Hogan Centers will eventually be closed. If that happens, yet another critical piece of the fabric of care for many of the most vulnerable people in this state will be lost.
DDS may be violating federal law in not offering Wrentham and Hogan Centers as options for care
Recent reports from the Department of Developmental Services (DDS) to the state Legislature show a continually declining number of residents at the Wrentham Developmental Center and the Hogan Regional Center, and indicate there were no new admissions to either facility last year.
The reports have been submitted to the House and Senate Ways and Means Committees in compliance with a requirement each year in the state budget that DDS report on efforts “to close an ICF/IID (Intermediate Care Facility for individuals with intellectual and developmental disabilities).”
The reports appear to confirm that DDS is not offering ICFs/IID (or ICFs/IDD) as an option to persons waiting for residential placements in the DDS system.
If so, that would appear to be a violation of the Home and Community Based waiver of the federal Medicaid Law (42 U.S.C. § 1396a(a)(8)), which states that intellectually disabled individuals have the right to ICF care.
In addition, the federal Rehabilitation Act (29 U.S.C., s. 794) states that no disabled person may be excluded or denied benefits from any program receiving federal funding.
The Wrentham and Hogan Centers, and three group homes at the former Templeton Developmental Center are the only remaining ICFs/IDD in the state. As such, they meet more stringent federal requirements for care and conditions than do other residential facilities, such as group homes, in the DDS Home and Community Based Services (HCBS) system.
The state budget language requiring reports on efforts to close ICFs/IDD appears to go back as far as Fiscal 2012, and it implies a bias in the Legislature against those facilities.
We were able to review the three most recent DDS reports to the Ways and Means Committees, for Calendar Years 2018, 2019, and 2020.
From 2018 to 2020, the reports state that the residential population or census at the Wrentham Center declined from 248 to 205, while admissions to the Center declined from only 2 in 2019, to 0 in 2020.
According to the DDS reports, the census at the Hogan Center declined from 119 in 2018 to 88 in 2020, while admissions declined from 18 in 2018, to 0 in 2020. (These census numbers don’t quite match up with other census data we have from the administration on the facilities, but all of the data show a continual decline in the census.)
Families largely satisfied with Wrentham and Hogan Center care
Based on the DDS reports, the decline in the census in both the Wrentham and Hogan Centers is largely due to deaths of residents in those facilities rather than discharges to the community system.
That would appear to support our observation over the years that parents and other family members of Hogan and Wrentham residents have been satisfied with the care at each of the Centers. If they were unsatisfied, they would have tried to seek community placements for their loved ones.
In our view, however, the DDS reports amount to a tacit admission by the Department that the Wrentham and Hogan Centers are eventually closing. The reports explicitly state that DDS will assure a “continuing ICF option” only for persons in the “Ricci class,” which are the dwindling number of people who are currently living in, or previously lived in, the state’s developmental centers.
Ben Ricci was the original plaintiff in the 1970s landmark federal class action lawsuit, Ricci v. Okin, that brought about upgrades in care for residents of the former Belchertown State School and other Massachusetts facilities for the developmentally disabled.
Those upgrades extended to the Wrentham and Hogan Centers. But the yearly DDS reports to the Legislature confirm our concern that DDS does not offer either the Wrentham or Hogan Centers as an option to people seeking residential placements for their loved ones with I/DD.
The declining census and admissions to the ICFs in Massachusetts are reflected in declining budget numbers for those facilities. In the DDS budget for Fiscal Year 2022, the corporate provider-run group home line item has been funded at more than $1.4 billion. That represents a 91% increase over the funding appropriated for the same line item a decade previously.
In contrast, funding for state-operated group homes and the remaining ICFs has been on a relatively flat or downward trajectory respectively.
Lack of understanding of the role of ICFs
At both the state and national levels, there is a lack of understanding of the critical need for ICFs/IDD and the fact that they that house and serve people with the most severe and profound levels of disability and medical issues.
There is a pervasive and deep-seated ideology that ICFs are overly institutional and prohibitively expensive to operate. But that ideology is misguided. As the VOR, an organization that advocates for persons with I/DD around the country, noted in a letter to the Senate Committee on Aging in Congress:
Community care does not provide the level or continuum of care needed by most of the I/DD population at the lowest level of these disabilities. Fewer necessary services are not proper care, and in the short-term (much less the long-term) do not provide necessary, life-sustaining care at the same cost level as ICFs.
Yet, the ideology at ICFs are no longer necessary can be found every year, as noted, in language in the Massachusetts budget.
Historical context of anti-ICF ideology
The anti-ICF stance of political leaders and policy makers and even many advocates for the disabled needs to be viewed in the historical context of the deinstitutionalization of people with mental illness and I/DD. That deinstitutionalization grew out of the warehouse conditions of the institutions prior to the 1980s.
Those anti-ICF advocates, however, have largely ignored upgrades in institutions, and particularly the efforts of the late U.S. District Court Judge Joseph L. Tauro, who oversaw the Ricci litigation that brought about improvements in institutional care in Massachusetts.
Deinstitutionalization has become a perfect storm of ideology and money that has kept a firm grip on our political system even though it has essentially been a failure for those it was meant to help. Deinstitutionalization has led to a tide of privatization of services for people with I/DD, and to skyrocketing salaries of executives of nonprofits that contact to provide residential and other care in the DDS system.
Proposed commission vulnerable to anti-ICF ideology
To this day, the anti-ICF ideology persists. At a June 21 legislative hearing in Massachusetts on a proposed state commission to study the history of state institutions for people with mental illness and I/DD, witness after witness denigrated ICF-level facilities as abusive and segregated from the wider community.
The hearing reinforced our concern that the makeup of the commission, as currently proposed, would provide fodder for those seeking to close the Wrentham and Hogan Centers.
As a result, we submitted testimony to a legislative committee considering bills to create the commission (S.1257 and H. 2090) that the commission should be reconstituted to recognize the significant upgrades in care and services that occurred in the state institutions as a result of the Ricci litigation overseen by Judge Tauro.
Calling for parity
That anti-ICF ideology is also reflected in President Biden’s American Jobs Plan, which includes $400 billion to expand access to Medicaid home and community-based services (HCBS) for seniors and people with disabilities.
In June, COFAR joined with AFSCME Council 93, a key Massachusetts state employee union, in warning that President Biden’s proposed $400 billion expansion of HCBS failed to provide any increase in funding for ICF-based care. As such, Biden’s plan could pose a threat to the future of ICF care and other state-run services.
In a jointly written letter to U.S. Senator Elizabeth Warren, COFAR President Thomas J. Frain and AFSCME Council 93 Executive Director Mark Bernard expressed overall support for the expansion of access to HCBS for people with I/DD and the elderly. But the letter noted that without the inclusion of additional funding for ICFs, Biden’s plan would create a strong incentive for Massachusetts to close the Wrentham and Hogan facilities.
As of mid-August, there has been no response to our joint letter from Senator Warren or her staff.
All of this shows how much of an uphill battle it has been to make the case for ICF-level care in Massachusetts and other states. We will continue to work to get the message get out, before it is too late, that ICFs provide a critical safety net of care for some of our most vulnerable members of society.
As the DDS reports to the Legislature show, however, time is running out.