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Retired Superior and Appeals Court judge writes about the care his brother receives at the Wrentham Developmental Center
[Editor’s Note: As we have previously reported, the number of residents remaining at the Wrentham Developmental Center and the Hogan Regional Center has continued to drop. As a result, these remaining, vitally important Intermediate Care Facilities (ICFs) in Massachusetts will eventually close if that decline is allowed to continue.
Mitchell Sikora, a member of COFAR’s Board of Directors, wrote the essay below about the importance of the Wrentham Center to his brother Stephen and himself, and submitted it to a member of U.S. Senator Ed Markey’s staff. We met last week on Zoom with one of the senator’s staff members to discuss our concerns about the future of the ICFs.
Mitch, 78, is a Massachusetts attorney and served as an assistant state attorney general for seven years; a private legal practitioner for 17 years; a justice of the Massachusetts Superior Court for 10 years; and a justice of the Massachusetts Appeals Court for 8 years. Since reaching the mandatory retirement at age 70, he has served as a voluntary mediator in the Superior Court.
Mitch and Stephen Sikora
We think Mitch’s account of the care that his brother receives at the Wrentham Center offers a clear explanation as to why ICFs are so important, and why eliminating those facilities as an option for care will be disastrous in Massachusetts.
It costs money to provide all of the specialists at Wrentham who care for Stephen and his fellow residents. But as we have seen, the closures of four of the six remaining ICFs in Massachusetts since 2012 has not resulted in a promised savings to the state. Over the past decade, the corporate provider-run group home line item in the state budget has grown from $760 million to $1.6 billion.
Moreover, We think Mitch’s list of recreational activities, both on-and-off-campus, that are provided to the residents at Wrentham debunks the myth that congregate-care facilities such as this one are institutional in character and warehouse or segregate those clients.]
My experience with ICFs in Massachusetts
By Mitchell Sikora
I am writing to report my experience with, and my support of, the continued operation of the remaining two ICFs for developmentally disabled residents of the commonwealth: the Wrentham Developmental Center in southeastern Massachusetts and the Hogan Regional Center in northeastern Massachusetts.
My younger brother Stephen, now 72 years old, has lived since age 10 at the Wrentham facility. The Center (originally named the Wrentham State School) has provided him with protection, care, affection, and community, especially since the major upgrade of all of the then Massachusetts state schools by federal district court litigation in the 1970s and 1980s, known collectively as the Ricci case and consent decree.
Since then, the Wrentham Center has functioned effectively as a campus village of concentrated human and physical resources benefitting Stephen enormously as he has aged.
I will do my best to describe the Wrentham Center’s human resources, its physical resources, and its communal benefits.
Human resources
The following personnel are assigned at the Wrentham Center to Stephen and each resident. A medical doctor oversees his health status. A nurse practitioner examines him promptly for any symptoms of illness. A daily staff nurse administers his medications and monitors his appearance.
His assigned social worker regularly visits him in his cottage dormitory and in socialization classes, and communicates her observations to us (his brother and sister).
A physical education specialist provides him with exercise at the Center’s gymnasium and swimming pool. A physical therapist has treated him for multiple orthopedic problems over the last 20 years, including knee replacements from arthritis, and hip and pelvic fractures from falls.
Vocational instructors have trained him to perform (to his own satisfaction) simple useful on-campus work, such as the collection and delivery of recyclable papers and objects. A recreational therapist periodically takes him for off-campus trips and treats, such as a stop at MacDonald’s. A psychologist responds to any episodes of behavioral or mood problems. A nutritionist watches his diet.
The Center also supports a “service specialist” program in which retired employees contract with families to take residents for off-campus rides or on trips to the families’ homes. Typically, the service specialists are familiar with the resident from years of work at the Center. With the fading of the COVID pandemic, the service specialist process can now resume.
Once each year, the Center must conduct a conference with each family to maintain and update the resident’s ongoing Individual Service Plan (ISP). The continuous Plan describes the resident’s health, activities, progress, problems, goals, needs, and spending objectives for the past and oncoming year. The Plan typically approximates 25 pages. The majority of the personnel enumerated above participate directly in the Conference (conducted by Zoom during the pandemic years) or contribute to the Plan.
As a final word about human resources, I should add that over the past 20 years, the Wrentham Center has received the dedicated service of three longtime facility directors and the involvement of devoted members of the Wrentham Family Association.
Physical resources
The Wrentham Center occupies a campus landscape of approximately 20 square blocks surrounded largely by open fields. The grounds include walking paths and picnic tables. The residents live in large cottages or small dormitories, each with a capacity of six to ten occupants.
Each resident has his or her own room. The communal bathrooms (with advanced shower facilities), kitchen, dining, and TV rooms are large and clean. Direct care workers are present at all times.
The campus contains a freestanding health care facility, the May Clinic, comprised of about 10 beds, three or four fulltime nurses, and visiting physicians. The Tufts Dental School maintains an office in the clinic.
The Wrentham Center has standing relationships with a number of hospitals, including New England Baptist for orthopedic care, and Brigham and Women’s Hospital, Sturdy Memorial Hospital, and Norwood Hospital for urgent and general care.
The campus buildings include a modern school structure of classrooms and meeting rooms; a gymnasium; a swimming pool; a canteen/snack bar; and two administrative buildings. Eight to 10 pre-1980s brick dormitories now long-abandoned remain scattered across the campus. The general setting is expansive and tranquil.
Communal benefits
A number of activities get the residents up and out of the cottage or dormitory:
- Physical ed classes at the gymnasium and pool. Classes at the school building in adult education, vocational education, and speaking skills.
- Day trips off campus to recreational parks, sports events, and the inevitable snack shops.
- The campus-wide Christmas decorations and party.
- A campus-wide spring celebration.
- A late summer week long country fair on campus conducted by a professional amusement company.
- Summer vacations of 3 or 4 days off campus conducted by staff and financed by families able to do so, or by the Center.
- The above mentioned service specialist program.
In all these activities the continuity and affection of the Center’s employees play a crucial role. Some of my brother’s caregivers have known and served him for more than 30 years.
My apologies for the length and detail of this message. I hope that it demonstrates the role of a well functioning ICF as a healthy community and home for its residents. It can serve as a unique concentration of both professional competence and elemental compassion.
A while back an old adage made a comeback: “It takes a village to raise a child.” I have thought that it applies even more so to the care of the developmentally disabled. At the very least, the families of the disabled deserve the informed choice of placement of their member in a well functioning ICF.
Since the great upgrade of the ICF system in the 1980s, the state has progressively reduced information made available to the public about the availability of the ICFs so that now only two ICFs remain in operation in Massachusetts. Those two facilities are subject to declining enrollment.
Post-Ricci administrations appear to retain a pre-Ricci vision of the care and conditions in the ICFs. That approach appears to have become dogmatic policy. It seems to me wrong upon several grounds. First, it is factually inaccurate and outdated. Second, it deprives applicant families of the opportunity of an informed placement choice. Third, it appears to violate requirements of both federal and state law that individuals and their families and guardians be able to make informed decisions about all available placements.
The federal Medicaid law and regulations require that individuals determined to be likely to need ICF-level care be informed of “the feasible alternatives” to that care, but also “given the choice of either institutional or home and community-based services.” [42 U.S.C.§ 1396n, and 42 C.F.R. § 441.302(d)].
However, as COFAR has often reported, families and guardians are generally not informed of the existence of the Wrentham or Hogan Centers. As such, those families and guardians are not being given the information or choices specified by the federal requirements.
Similarly, the Massachusetts Department of Developmental Services (DDS) regulations call for “informed consent” for admission to any departmental facility, including an ICF or group home. [115 CMR 3.04.] I suspect that additional sources of law and context would fortify the inherently fair and rational standard of informed consent and choice.
Faithful compliance with the legal standard of informed choice requires DDS to provide a family in need of a placement with a clear and explicit description of the ICFs and their resources and activities, and, if requested, with visiting tours of those facilities.
I hope that these thoughts are useful. Please do not hesitate to contact me for more information. Email: mitchsikora@gmail.com.
Seeking a chance to speak truth to power
State Rep. Anne Gobi (right) listens to Joan Douty (center) talk about her daughter's experience at Glavin
The administration, which also has no time to listen to people like Joan Douty, claims Glavin and the other centers must be closed because they’re too expensive to operate. But COFAR has maintained that the administration’s claimed cost savings in closing the centers appears to be based on an apples-to-oranges comparison of the average community-based resident and the average facility-based resident. Developmental center residents are older, more medically involved and more intellectually disabled on average than community-based residents.
Moreover, as COFAR and other advocates have noted, the centralized services model of the developmental centers is highly cost-efficient when compared to the dispersed clinical, medical, and day services that characterize the community system.
COFAR has called since last year for an independent study of the cost of closing or maintaining the developmental centers because previous budget amendments have resulted in flawed analyses done by the administration itself, concluding, of course, that the facilities should be closed.
But here’s the problem. In the Massachusetts Legislature, a handful of people make all the decisions, and Rep. Dempsey is one of them. There was no floor vote this week on Rep. Gobi’s amendment for the independent study. In a closed-door meeting in his office, Dempsey simply ordered that Gobi’s amendment be scuttled. It was not included in a catch-all budget amendment boosting human services line items that will be voted on this week.
Among those who Rep. Dempsey apparently has been listening to are the human service vendors in Massachusetts, who run most of the community-based group homes in the state and who are seeking more business when the developmental centers are closed. In a letter sent to Dempsey and other legislators a day before Gobi’s amendment was thrown out, the Association of Developmental Disabilities Providers continued to pump out misinformation about the developmental centers.
The ADDP letter called for rejection of Gobi’s amendment and repeated the dubious claim that the developmental centers are “expensive and inefficient to operate.” So why not agree to an independent study which would settle the question as to which system is most efficient? To that, the ADDP letter made the ridiculous assertion that “this issue has been the subject of study for 30 years.”
Among the other pieces of misinformation in the ADDP letter was the claim that the developmental centers aren’t needed because “families overwhelmingly choose community settings for their loved ones.” The ADDP letter didn’t mention that that’s because admissions to the developmental centers have been effectively blocked since the 1980s.
The fact is that families that are being transferred from the developmental centers targeted for closure have overwhelmingly chosen to be placed at other developmental centers or in state-operated group homes. They are avoiding the vendor-run system because they know it is beset with problems of poorly paid and under-trained staff.
The Senate now remains the only real hope for this sorely needed independent cost study. We believe the study should be done by a non-governmental entity selected by either the State Inspector General or State Auditor. Once again, though, the question remains whether Senate leaders will allow such an amendment to be debated in the light of day or whether they will do what the House did and quietly kill it in the proverbial smoke-filled room.
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