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Healey administration denies family’s request to place severely disabled woman at Wrentham Center
The Healey administration is refusing to admit a severely disabled woman to the state-run Wrentham Developmental Center even though state officials have been unable to find a suitable placement for her in any other residential setting.
As a result, Kristen Robinson, 50, who is profoundly intellectually disabled, blind, and quadriplegic, has been confined to Faulkner Hospital in Boston since early last month following a choking incident in her family’s home. She has seizure disorder and severe dysphagia, a medical condition that causes an inability to swallow.
Emails show that the Department of Developmental Services (DDS) denied a request by the hospital last month to discharge Kristen to the May Center, a medical unit at the Wrentham facility.
Kristen Robinson (right) and her sister, Kim Meehan
Kristen’s sisters and co-guardians, Kim Meehan and Karen Brady, want her to be admitted permanently to the Wrentham Center. They argue that Wrentham provides a higher and more comprehensive level of care than can be found in the DDS-funded, provider-based group home system.
Administration officials, however, have insisted that suitable settings for Kristen can be found in the group home system.
But the only group home identified so far by DDS as a possible setting for Kristen rejected her placement there in March because the home cannot accommodate residents in wheelchairs. In addition, as many as 25 nursing homes have indicated they would be unable to accommodate Kristen.
A clear case of need for an Intermediate Care Facility
Kristen had lived her entire life under her mother’s care in Walpole. But when their mother died last December, Kim and Karen and their husbands began to take turns caring for Kristen and staying overnight with her.
In a January 11 email to DDS Newton/South Norfolk Area Director Jane Fuller, Kim explained that her mother had died the previous month, and that Kristen needed a setting that would provide 24/7 nursing care due to her seizure and choking disorders. “Immediate help from DDS is necessary for Kristen’s safety and well being,” Kim wrote. “Please expedite the visit to WDC (the Wrentham Developmental Center)…”
Kim also said she and Karen are paying part of the cost of in-home care for Kristen out of pocket. She said that while Kristen needs 24/7 care, MassHealth is funding a maximum of only 10 hours a day of in-home services for her.
The Wrentham Developmental Center is an Intermediate Care Facility (ICF), which meets strict standards for care under the federal Medicaid Law. As we have reported, the administration has been allowing the census to drop at both the Wrentham Center and the Hogan Regional Center, the state’s only two remaining congregate ICFs.
A series of administrations has moved for decades to phase out state-run residential care for persons with intellectual and developmental disabilities (I/DD) in Massachusetts, and to replace it with contracted care in state-funded group homes. Nevertheless, we have long argued that the Wrentham and Hogan Centers provide a critical backstop for care for those persons with the most severe and profound levels of I/DD.
In an email last month, Fuller stated to Kim Meehan and Karen Brady that Kristen has “no right” to ICF care.
In our view, however, federal law and regulations do provide a right to ICF care to anyone who has been found to be eligible for that level of care, which is the case with Kristen.
Kim said the administration “is completely blocking Kristen’s right of choice of either an ICF or a community-based setting. DDS has given us no options for care in any setting,” she added.
Kristen’s case appears to be a clear case of the current administration’s improper refusal to offer an ICF placement to an individual who needs that level of care. It raises the question whether the administration has any consistent standard for admissions to ICF-level facilities.
Group home identified by DDS would not accept Kristen
Kim said that earlier this year, DDS began to look for a possible community-based placement for Kristen.
In March, DDS had identified a group home in Millis, operated by BAMSI, a DDS provider. But Kim said that when she, Karen, and an aide to her local state legislator, Representative John Rogers, arrived at the home with Kristen on March 20, the group home’s nurse said the residence couldn’t accommodate Kristen because she was in a wheelchair. The nurse said DDS had not informed her that Kristen was in a wheelchair and is quadriplegic.
Since then, Kim said, DDS has not identified any other potentially suitable group homes for Kristen. Since last month, she said, Faulkner Hospital has contacted as many as 25 nursing homes as possible placements for Kristen. None of those nursing facilities have apparently been able to accommodate her either. All have rejected her admission.
Ironically, the Healey administration recently promised to move 2,400 disabled persons out of nursing homes to settle a lawsuit alleging that those individuals had been improperly placed in nursing homes. That case follows the historic Rolland v. Cellucci lawsuit, which similarly resulted in the discharge of persons with I/DD from nursing homes in Massachusetts.
State officials suggested lowering bed to the floor
Kim said that despite Kristen’s limited ability to move, she can roll over and fall out of most nursing home beds. Nursing homes, in fact, are largely prohibited from using beds with side rails. That is one of many reasons, Kim maintained, that nursing homes are not appropriate settings for persons like Kristen with I/DD.
Yet, Healey administration officials are apparently not ruling nursing homes out in Kristen’s case. Kim said that in a meeting she had with ombudsmen from both DDS and the Executive Office of Health and Human Services (EOHHS), one state official suggested lowering Kristen’s bed to the floor, and placing mats nearby.
Kim said one of the many problems with that suggestion is that Kristen has pica, an eating disorder in which she will eat non-food items. “She will eat anything on the floor,” she said.
“Think about a 10-week-old,” Kim wrote to us in an email. “How they behave; what they are capable of. That is Kristen! I’m fighting hard with everything I have! I do not understand how my sister can be treated like this as a disabled person!”
DDS official claims, “No one has a ‘right’ to an ICF”
In a March 20 email to Kim, the same day that the BAMSI nurse stated that the Millis home couldn’t accommodate Kristen, Fuller first stated that, “No one has a “right” to an ICF.” She then asserted, directly after that statement, that, “DDS does not force anyone to accept services.”
It’s not clear what Fuller meant by the second statement, other than possibly implying that Kim and Karen would have to accept DDS’s position against ICF care if they wanted services at all for their sister.
DDS statement ignores federal law and regulations
In our view, Fuller’s claim that no one has a right to ICF care does 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.
The HCBS waiver was established to allow states to develop group homes as alternatives to institutional care. However, the Medicaid statute did not seek to abolish institutional or ICF care. Such care must remain as an option as long as states such as Massachusetts receive federal Medicaid reimbursement for operating ICFs.
The Medicaid statute states that if a state does include ICFs in its “Medicaid State 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)]
There is nothing in the Medicaid statute that exempts states from offering an ICF as an option in response to an application for that form of medical assistance. Persons who are found to be eligible for HCBS waiver care, as Kristen was, have been found to meet the eligibility requirements for ICF-level care.
Moreover, 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.)
DDS official makes inaccurate claims about ICF closures
In an April 19 email to Karen and others in the case, Fuller made a number of additional statements, which we believe are inaccurate, to support the DDS position that the Wrentham Center is not open to new admissions. She stated in the email that:
As to the question of admission to the Wrentham Developmental Center, admissions to all institutional care facilities were closed with the settlement of the RICCI class action lawsuit. Many of the facilities are completely closed. The last one to close was the Fernald Center in Waltham. From the settlement agreement, DDS is to provide the least restrictive community setting options for people who are determined eligible for DDS.
In our view, this statement is largely untrue. Fuller referred in it to the Ricci v. Okin class action lawsuit, which was filed in the 1970s in Massachusetts in response to poor care and conditions in what were then referred to as “state schools” for persons with I/DD, including the Wrentham and former Fernald Centers.
The Ricci case was never “settled.” It was turned into a federal consent decree, which actually resulted in upgrades at the then existing developmental centers in the 1980s.
Moreover, the Ricci case itself didn’t result in the closures of any of the developmental centers. Fernald and a number of other developmental centers were closed as a result of policies instituted by a succession of Massachusetts governors from the 1990s onward.
Many Fernald clients were actually transferred, based on requests by their families or guardians, to the Wrentham Center, which continued to admit a handful of new clients in recent years.
Our Public Records Request
Given the concerns this case raises for us regarding the apparent lack of standard criteria for admissions to the Wrentham and Hogan Centers, we filed a Public Records Request on April 24 with both DDS and EOHHS, asking for their written policies concerning admissions to Wrentham, Hogan, and state-operated group homes in Massachusetts.
On May 7, EOHHS stated that that agency did not have any records responsive to our request. DDS stated that it needed an additional week — until May 15– to provide us with a response.
If the administration does not consider someone with Kristen’s functional limitations and medical problems a suitable candidate for the Wrentham Center, we fear it may spell the beginning of the end for ICFs in Massachusetts. Wrentham and Hogan are critically important pieces of the fabric of care for some of the most vulnerable persons in this state.
We hope our state legislators will get involved to put pressure on the administration to follow the law, and to recognize the needs and desires of Kristen, her family, and many others like them who are similarly seeking residential placements at Wrentham, Hogan, and other state-run facilities.
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