UPDATE: DDS Commissioner reneges on short-lived promise of temporary placement of severely disabled woman at Wrentham Center medical unit
On Friday afternoon, Kim Meehan and Karen Brady thought their prayers had been answered when Department of Developmental Services (DDS) Commissioner Jane Ryder called them and said she had decided to place their sister, Kristen Robinson, at the medical unit at the Wrentham Developmental Center.
Up to that moment, as we last reported, the Healey administration had been refusing a request by Kristen’s family to admit her to the state-run Wrentham Center even though state officials have been unable to find a suitable placement for her in any other residential setting.
For nearly two months, Kristen, who is profoundly intellectually disabled, legally blind, and quadriplegic, has been confined to Faulkner Hospital in Boston 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.
Kristen Robinson (right) and her sister, Kim Meehan.
Then on Friday afternoon, after our last post ran, Kim and Karen, who are Kristen’s co-guardians, got that call from Ryder. According to Kim and Karen, Ryder said that while Kristen wouldn’t necessarily be accepted at Wrentham on a permanent basis, she would at least be evaluated at Wrentham’s May Center medical unit, and would receive rehab services for her medical conditions.
“We’re celebrating,” Kim told us on Saturday. “But there’s more work to be done,” she added, meaning she and Karen would continue to advocate for a permanent placement for Kristen at Wrentham, one of the state’s two remaining Intermediate Care Facilities (ICFs). The other such facility is the Hogan Regional Center in Danvers. ICFs must meet strict standards for care under the federal Medicaid Law.
Kim and Karen said Ryder told them the transfer from Faulkner Hospital to the May Center would take place by Tuesday of this week. They maintained it couldn’t come soon enough for Kristen, 50, given that Faulkner is not equipped to provide adequate care for her.
The hospital, Kim said, does not even have the ability to shower Kristen, and she consequently has rashes on her body. Kristen has received no intellectual stimulation at Faulkner, she added, and has become emotionally withdrawn there.
Promise of May Center placement then evaporates
But Ryder’s promise subsequently evaporated. Following Friday’s call, neither Kim nor Karen received any further word from Ryder nor anyone else at DDS through Tuesday of this week, even though they both left several phone and email messages with Ryder’s office that day and the day before.
Finally, on Wednesday afternoon, Ryder called them back. In that Wednesday phone call, Ryder now said she couldn’t admit Kristen to the May Center, Kim said. “She said she didn’t realize that the May Center only treats Wrentham (Center) residents, and they don’t take outside referrals.”
Kim said she doesn’t believe it is necessarily true that the May Center takes only Wrentham residents. In any case, she maintained, Ryder would certainly have the authority to override departmental policy and order Kristen’s admission there.
“We feel sick about what has been done to us,” Karen said on Wednesday. “Kristen is still in a hospital bed at the Faulkner. She should have been at the May Center by yesterday (Tuesday).”
Kim said that when she and Karen pushed back during the Wednesday phone call with Ryder and insisted that she had made a promise regarding Kristen, Ryder claimed that, “Karen and I must have misheard her. We didn’t mishear her. We were both there when she called the previous Friday along with one of Kristen’s caregivers. All three of us heard her.”
Ryder appears to offer Hogan or state-operated group home
Kim said that during the Wednesday call, Ryder told them Kristen could go to the Hogan Center for an evaluation and possible rehab, though she would not be admitted there; or she could go to a state-operated group home, which Ryder claimed was available in southeastern Massachusetts.
But Kim said Ryder would not tell them where the group home is located unless they agreed to accept it. Such an agreement, Kim said, would potentially involve waiving their right to an ICF such as Wrentham or Hogan.
Kim added that Ryder said the group home does not have rehab facilities, but that “they could try to get PT (physical therapy) and OT (occupational therapy) for her there.”
It’s not clear why the medical unit at Wrentham is only available to Wrentham Center residents while the Hogan medical unit apparently would be available to Kristen. Kim also noted that while the Wrentham Center would only be a short drive from her home in Norfolk, Hogan would require them to make a 3-hour round trip to visit Kristen.
Kim said Ryder’s tone during the Wednesday call was no longer as friendly as it had been the previous Friday. On Friday, Kim said, Ryder had told them the promised placement at the May Center “’will be your Mother’s Day gift,’” referring to their mother who had died last December after having taken care of Kristen all her life.
Kim said that after she and Karen continued to push back on Ryder’s subsequent withdrawal of that promise, Ryder said, “’I think we need to end this call,’” and hung up on them.
Administration appears to be phasing out ICF-level care
As we have reported, the administration has been allowing the census to drop at both the Wrentham and Hogan Centers.
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 intellectual and developmental disabilities. But in an email to Kim and Karen last month, a DDS official stated that Kristen has “no right” to ICF care.
In our view, 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.
Provider-run group home and nursing homes unable to accommodate Kristen
Thus far, DDS has been unable to find a residential facility, other than Wrentham or Hogan, that could accommodate Kristen. The only provider-run 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.
Ryder’s initial promise on Friday to allow at least a temporary placement for Kristen at the May Center followed a phone conference on May 8 between Kim and Karen and officials with both DDS and the Executive Office of Health and Human Services (EOHHS) about possible placements for Kristen.
Kim said the EOHHS and DDS officials told them during the May 8 phone conference that they would have to continue to try to find a nursing home for Kristen.
Kim said, however, that as of last week, Faulkner Hospital had been unsuccessful in finding a nursing home that would take Kristen. At that point, over 20 nursing homes had said they couldn’t accommodate her.
As of May 8, two nursing homes apparently remained as possibilities. But Kim said that when they contacted both nursing homes at the suggestion of both DDS and EOHHS, the administrators there said they didn’t have staff available to provide the one-on-one care that Kristen needs.
Kim said that during the May 8 phone conference, she asked an ombudsman for DDS what the purpose is of an ICF such as Wrentham if DDS is so unwilling to allow admissions to it. She said the ombudsman replied that”‘an ICF is for people who have failed in most other places.'”
We hope the administration does not intend to force Kristen into the community-based system where they almost certainly will fail her.
It seemed briefly that Commissioner Ryder had finally made the right decision in promising to place Kristen at the May Center. But for reasons about which we can only speculate, Ryder has gone back on that promise.
Please let the co-chairs of the Legislature’s Children and Families Committee know about this case by emailing them and including the link to this latest post. Let them know that Kristen needs to be admitted A.S.A.P. to Wrentham.
The committee co-chairs are State Senator Robyn Kennedy (at Robyn.Kennedy@masenate.gov), and State Representative Jay Livingstone (at Jay.Livingstone@mahouse.gov).
Thanks!
COFAR blog 
This is an utter disgrace and DDS should be ashamed! It’s politics over people and I am glad they are being called out on it. It’s about time.
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It looks like the Ryder decision may have been overridden by Governor Healey. What the administration did to this family is incredibly cruel.
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No one likes to think about the nuclear option, but… How does one go about making someone a ward of the state? Following on that, would the Disabled Persons Protection Commission have any power to force DDS to do the right thing here? For that matter, could we all file complaints with the DPPC on the abuse we’re witnessing here? I feel like many of us are experiencing trauma as a result of having the state’s utter lack of concern for our loved ones shoved in our face in such an overt and reprehensible manner.
If this family can’t get appropriate assistance, who can?
I reported this story to both Senator Warren and Senator Markey in the course of asking for their assistance in our own case. I haven’t heard anything from Senator Markey’s office yet. However, a case worker from Senator Warren’s office did speak to me.
She found our family’s situation too unique (disabled adult child receiving institutional care unable to move to MA without some transition planning between states), but said she would keep an eye out for how often similar things occurred with other constituents in the future.
I mentioned that what she should be looking for is what happens when parent caregivers of adults with severe autism and intellectual disability die. That does happen quite a bit more often. DDS is going to avoid providing services under those circumstances as well, if they can force family to take it on for free. DDS knows that the ICFs are the only appropriate care available to those individuals, particularly those individuals who also require skilled nursing care. But they will avoid providing required services unless and until they are sued in court. Most families don’t have the resources to do that and DDS relies on that.
Would DDS remain steadfast in their douchebaggery if they weren’t able to rely on the free labor of female siblings to do their job for them? Would the hospital have more latititude to force a placement in an appropriate care facility if family weren’t assumed to be available? The hospital needs that bed back. The hospital also cannot provide the breadth of care Ms. Robinson requires.
Clearly, a Level II PASRR should have been completed here – by DDS, I believe. I would be very interested in seeing that form and DDS’s conclusions. The family should FOIA it. Ms. Robinson has the need for 24/7 skilled nursing care. Given that she obviously has ID as well, that means placement in a nursing facility with specialized services for her intellectual disability. It is true that regulations do not state that it has to be an ICF nursing facility.
But the state does not get to discriminate against Ms. Robinson for having intellectual disabillity. She needs nursing facility care. If the state doesn’t want to place her at the ICF, they need to set up the required specialized services at another nursing facility. I don’t believe it would be legal to say that intellectually disabled persons can never receive nursing facility care within the State of Massachusetts, based on their disability.
The abuse and discrimination in this case is so blatant that we really can’t allow it to stand. Shame needs to be heaped upon any and all officials that stand aside and allow the egregious treatment of this family by DDS to continue.
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I don’t think it is ever a good idea to give up guardianship. That gives the state the option to do whatever they want. The DPPC is good for creating a paper trail. Other than that, they can’t do that much. It’s highly unlikely that Warren’s office or Markey’s office will do something, but maybe worth a longshot try. Ditto on the chairs of the state Committee on Children, Families, and Persons with Disabilities. Since the decisions are coming out of the administration, it is unlikely that a solution will come from anyone in the state. A lawsuit could possibly work, especially since most of our loved ones aren’t getting the allied health services and other health services they need. However, we need a pro bono lawyer willing to help us. Otherwise, this will run into lots of money that we don’t have. Organizations such as VOR, the National Council on Severe Autism, and the Profound Autism Alliance all believe in the full continuum of care and in family choice. I hope that everyone will consider supporting these organizations that are fighting for what we need in Massachusetts. During my Washington DC visit, a group of us from VOR met with Alison Barkoff, the administrator for the federal Agency for Community Living. She believes that people with severe IDD and/or autism can receive the services they need in the community. I told her that right now, this is not the case. We are not receiving the services. We also told several lawmakers that those with severe IDD and/or autism are not receiving essential health services.
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The state of Massachusetts should be ashamed of themselves. Wrentham sounded like the best option for Kristen. No parent should have to go through this nightmare.
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Wisconsin has two remaining State Run home which do not accept new clients. Then there was a person who was admitted and got much better (better care) and then was sent back home where they progressed to get worse. Without fanfare they were readmitted. Quality care
What we suffer at the hands of those who CLAIM THEY KNOW WHAT IS BEST FOR OTHERS.
When we will figure out how to call out the those who tell lies about us???
On October 31, 2023 the Dept of Justice Civil Rights Division published the ADA Integration Mandate focused on Sheltered Workshops and Facility Based Day Programs claiming that they are Segregated and must by law be integrated.
Unless and until there is a massive challenge to these LIES we will keep on loosing
Will gladly share the 16 pages of comments on just the first 2 pages of the ADA Integration Mandate.
Thomas Spellman 414 403 1341
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disgraceful!!!
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They treat people like they’re stupid. They’ve been doing this for decades.
If Kristen qualifies for nursing home placement, she qualifies for ICF placement.
I think there’s a reason why Ryder doesn’t want Kristen evaluated at May Center and I think I know what it is.
Ryder’s conduct is nothing short of deceitful. Pretty sure she’s going to say that you were offered a placement and that you rejected that placement. One of the several problems with this is that you need to be informed of all the terms and conditions in advance and that did not happen. It appears that she tried to set you up, but instead she may have set herself up.
You requested ICF placement and she denied you.
I agree with COFAR:
“In our view, 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.”
I think the reason DDS is helping the ICF census decline is so that when they get sued they can say they don’t have an ICF.
Never give up!
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There are many who have suffered the cruelty and dishonesty of DDS. Not until there is a new administration or an attorney who will take up a class action law suit (pro bono) against DDS on behalf of all the aggrieved persons, they will never be made accountable. The bullying and abuse of power has been sanctioned from the very top, that’s why no one calls you back or looks into any of these crimes DDS is committing. The state needs money, so if they can refuse service to people who have a right to them, they can save money to use somewhere else and we all know what it will be used for.
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