COFAR blog

When Susan Fernstrom got her developmentally disabled daughter, Holly Harrison, into a group home in Danvers in June of 2015, she thought it would lessen some of the growing burden on her of caring for members of her family.

Susan’s husband, Patrick, was terminally ill with a brain tumor and needed his own intensive care. He died in December of that year.

Holly, who is now 39, had been born with Galactosemia, a rare genetic disorder, that causes intellectual disability and other complications, including coordination issues, and requires a controlled diet.

The group home is run by Toward Independent Living and Learning, Inc. (TILL), a corporate, nonprofit provider funded by the Department of Developmental Services. The residence was brand new and beautiful, and centrally located in the downtown in Danvers, near the mall.

But almost immediately, Susan became concerned when she realized there were no meal plans for any of the five women in the house. Two of the women are diabetics, and, like Holly, require special diets.

Susan Fernstrom and her late husband, Patrick.  They arranged for their daughter, Holly’s, admission to the TILL-operated group home six months before Patrick died.

Beyond that, Holly wasn’t getting fed regularly. She was not fed or given water for up to nine hours at a time, Susan said. On many occasions, the staff forgot to give her lunch, particularly on weekends. In one instance, Holly was given a sandwich by the staff to eat that contained uncooked bacon.

The home wasn’t kept clean. There was clutter left outside Holly’s bedroom door and mold on the bathroom shower curtain and on the floor of the shower. “The bathroom was often filthy,” Susan said. “The staff would clean it when they knew investigators were coming, mostly due to complaints from me,” she said. Raw meat was often left in the sink.

In addition to the mold and clutter, it took months to hook up a shower curtain rod to the bathroom wall.

There was only one working light in the basement even though that was an area set aside for storage of extra clothing for Holly, which Susan frequently had to retrieve. Also, there was furniture and a large carpet roll placed in way of the clothing bins.

But when Susan raised these issues, she never anticipated the push-back she would receive, not only from the staff, but from Dafna Krouk-Gordon, the president of TILL. As of last August, Susan found herself banned under a written directive from TILL from entering the group home and therefore from being able to check directly on the care there.

We believe that ban violates DDS regulations, which give DDS clients the right to receive visitors, and which specifically state that family members and guardians shall be permitted private visits “to the maximum extent possible.”

The regulations add that clients and their family members and guardians must be allowed to meet “under circumstances that are conducive to friendships and relationships,” and that the location must be suitable “to confer on a confidential basis.”

However, under the ban imposed by TILL, Susan has been required to wait outside the house to meet with Holly, even in the dead of winter. She said the situation has made her feel “humiliated and like a criminal.”

Then, on March 20, Krouk-Gordon notified Susan in writing that her daughter would have to move out of the residence as of the end of April. The written notice did not accuse Susan or Holly of causing any disruption in the operation of the residence, but rather stated that Holly must move because the group home could not accommodate her need for assistance during nighttime fire drills.

Susan believes the real reason for the eviction notice was that she had raised issues of inadequate care and poor conditions in the residence.

We believe the eviction notice violates additional DDS regulations, which require a 45-day notice and the guardian’s consent to any move.

“I feel sick all the time and can’t sleep or eat,” Susan said.

I attempted to contact Krouk-Gordon both by telephone and by email. My email message, which I had sent on April 16 to her email address listed on the TILL website, was blocked. I then resent my query to other officials at TILL, but to date, no one has responded to it.

Throughout the ordeal, Susan said she has felt a lack of support from DDS officials whom she believes have allied themselves with Krouk-Gordon. She contends that rather than addressing her concerns, Kelly Lawless, DDS northeast regional director, has appeared to support Krouk-Gordon’s intention of evicting Holly from the residence.

Susan said that Holly has a strong emotional attachment to the other women in the group home, and that she does not feel, as her guardian, that it would be in Holly’s best interest to be moved to a place she is not familiar with and in which many of the same problems might reappear. What she would like to see happen is strong pressure put on TILL by DDS to fix the problems in Holly’s current residence.

We have heard of no evidence that Susan ever acted in a disruptive way either inside the home or in any other location. It appears that the only reason for TILL’s prohibition against her from entering the home and subsequent notice of eviction of Holly is that Susan has pointed out deficiencies in the care and conditions in the residence on a number of occasions.

Susan said she has both met and had a conference call with DDS Commissioner Jane Ryder, and that Ryder seemed sympathetic, particularly to her concern about being banned from the residence and Holly’s potential eviction. She said Ryder assured her early this month that she would issue a directive to Lawless “to work on these issues,” and that the directive would address the ban on entering the residence.

However, Susan said that in a subsequent phone conversation she had with Lawless, Lawless told her that she wanted only to discuss moving Holly out of the residence, and referred several times to Susan’s relationship with TILL management and staff as “broken.”

Susan said that at one point in that conversation, Lawless stated that an alternative residence for Holly had been located in Gloucester. Susan told her that as Holly’s guardian, she wanted to live close to her and that the Gloucester location was more than an hour away.

But Susan said Lawless not only appeared unsympathetic to her concern, she admonished her for voicing it, saying she was “‘appalled that this is all about you, Susan, not wanting to drive.'” Susan responded that it was not about her, but about her need, as Holly’s guardian, to be near Holly.

Last Tuesday (April 17), I emailed Ryder, asking if she would respond to those and other concerns and questions we have raised about this case. To date, I’ve received no response from Ryder.

On Wednesday, April 18, the day after my email to Ryder, Susan received an email from Lawless in which Lawless stated that in response to concerns Susan had raised about the TILL residence, Lawless and other DDS officials have directed DDS’s human rights officer “to make an unannounced visits (sic) to the house, and asked the Area Office to increase their visits to the house.”

Lawless said she and other DDS officials have “also asked our Office of Quality Management to conduct a review of the home to determine whether conditions in the home meet DDS quality standards.”

In a response to Lawless, Susan said she was pleased to hear about the planned visits and review by DDS. But she told Lawless she remained concerned that many of the issues she has raised, such as the staff’s failures to feed Holly adequately and regularly provide water to her, may not be observed by the inspectors.

In her email, Lawless appeared to walk back Krouk-Gordon’s eviction notice, at least partially. Her email stated that, “as I previously reported, DDS staff have worked with TILL and there is no plan to discontinue Holly’s services with TILL as of April 30, 2018.”

But Krouk-Gordon has not rescinded the March 20 eviction notice to Susan, and Lawless’s email made no mention of that notice. Lawless’s message also appeared to imply that DDS is continuing to push for Holly’s ultimate removal from the home. Lawless stated that, “I encourage you to work with DDS and TILL on coming to an agreement as to how appropriate services can be provided to Holly going forward, including exploring other options available, such as the Gloucester residence.”

Lawless’s email also appeared to suggest that even further restrictions on Susan’s access to Holly in the TILL residence might be imposed. While acknowledging that Susan has “concerns” regarding “the current guidelines in place around your visitation with Holly,” Lawless stated that she had reviewed the TILL directive banning Susan from the residence and had determined that the directive was “reasonable and compliant with DDS regulations concerning visitation.”

Lawless’s email, however, did not mention that the directive from TILL prohibits Susan from entering the home (see details of the directive below). Lawless described the directive as simply requiring “coordination and notice of any visits to the home and that the scheduled visits are to be at a mutually agreeable time.”

Lawless then indicated that she would seek to enact restrictions on visitation times for Susan. “I would like to suggest establishing a set time each week for the visits,” Lawless stated. “Having a set time, or times, each week will minimize the challenges around scheduling and allow for consistent visits with Holly.  I’m happy to coordinate with TILL a standing schedule if you would send me your preferred days and times.”

Lawless’s email did not state that Susan would be allowed inside the residence during those visits.

Visitation ban appears to violate DDS regulations

The written directive banning Susan from entering Holly’s residence was presented to Susan following a meeting she had with the group home staff last August 11. The directive was headed “Ash Street (group home) Family Communication Guidelines.”

While labeled “guidelines,” the document’s provisions were presented as binding policy on Susan.  Among the statements in the directive were the following:

• You (Susan) will not go into the residence to bring items to Holly’s bedroom or go into the kitchen. Anything you need to deliver to the residence must be given to the staff or the manager and they will see that it is properly put away.

• We ask that you not go inside the home unless there is a planned event or meeting that has already been established with the manager ahead of time.

• Susan and the Residence Manager will communicate by telephone once per week at a time that is mutually agreed upon.

• It is essential that you speak to the manager rather than speaking to staff directly. Only the manager can make house plans and follow through with scheduling needs.

• All supervision of Holly’s diet will be handled by the residence LPN and Nutritionist. All changes to the menu and/or grocery list will be made through the nutritionist and LPN for the house. (The LPN never has had anything to do with Holly’s diet, Susan said.)

• We ask that you only communicate with the nutritionist by email given that the time is limited and she receives multiple calls daily from the house as needed.

Since receiving the directive, Susan said she has been banned even from waiting for Holly in the foyer of the house, and must stand outside, even in the winter. In addition, the weekly phone calls with the house manager have been canceled, she said. And she has been told not to contact the nutritionist at all.

As Holly’s guardian, it is Susan’s legal duty to oversee her care and advocate in her best interest. Blocking her from having contact with her daughter inside her residence impedes her ability to carry out her legal duties as guardian.

Also, contrary to Lawless’s contention, we believe the ban on entering the group home violates DDS regulations governing the rights of DDS clients, which include “the right to be visited and to visit others under circumstances that are conducive to friendships and relationships…”

The DDS regulations further state that a DDS client’s guardian or family members “shall be permitted to visit at all times, unless the individual objects, and shall be provided with a suitable place to confer on a confidential basis…” (My emphasis)

The same DDS regulations state that:

Reasonable restrictions may be placed on the time and place of the visit in order to protect the welfare of the individual or the privacy of other individuals and to avoid serious disruptions in the normal functioning of the provider.  Arrangements shall be made for private visitation to the maximum extent possible. (my emphasis)

Susan said she thinks the real reason for the draconian restrictions placed on her is that TILL’s management is “trying to keep me from knowing anything about what is going on in the home.”

Susan said she was told that her presence in the residence was making residents uncomfortable, but Susan doesn’t believe that is the case. “That’s a lie,” she said. “The other girls (in the house) gave me hugs and asked how I am. I would make them omelets, and I showed staff how to make fresh fish. Of course, I’m not allowed to do any of that anymore.”

Susan added that she personally purchased needed cooking equipment for the entire house, and brought the residents and staff fresh corn on the cob, strawberries and apples from a farm over the summer.

In other cases that we have investigated, we have found that the statement that a family member was making residents uncomfortable was often used as an excuse for restricting their access to persons living in provider residences.

Susan said that the directive banning her from the residence appeared to follow directly from checks she had been doing under an agreement with the staff of the cabinets and the refrigerator in the kitchen “to make sure the food they were buying for Holly was dairy free.” After doing the checks “for about three weeks and informing the staff that there was dairy in multiple food products, including food bought specifically for Holly,”  Susan said she received the directive denying her access to the kitchen and entire house.

With regard to the requirement that she communicate directly with the house manager, Susan said she usually attempted to phone or email the house manager, particularly in instances in which Holly had missed appointments, but her emails were often not answered and the manager’s voicemail was often full. She said she once talked to the house staff during a weekend visit because she found that no lunch had been given to Holly that day. “Our conversation was very polite,” she said. “There is no one you can reach in management on weekends. My daughter needed to eat.”

The ban on allowing her into the house has made it particularly difficult to get Holly ready for outings and trips home, Susan said. The staff would frequently forget to pack needed items such as underwear, pants, pajamas, and medication.

Recently, despite the visitation ban, Susan said she requested to be allowed into the basement to see what clothing Holly now has. “ I haven’t been allowed in so long I can’t remember,” she wrote in an email to us. “I know Holly is missing things and I know the staff doesn’t know everything she has. Do I sound frustrated?”

In her email response to Lawless’s April 18 message, Susan stated that:

I want the ability to visit Holly on any day of the week or (at any) time as long as it is not disrupting the functioning of the home, and set visitation times will not allow that flexibility nor does that allow for visitation to the maximum amount extent possible.

My daughter is not in a prison, this is her home and Holly has the right to visit with friends and family as the regulations clearly state.  I also want the ability to sit in the living room with Holly or if we choose or walk into the kitchen with her as any other house guest would do and as other family members are permitted to do.

When I drop Holly off after a visit outside the home I want to walk inside the front door and stand in the foyer area, as any other parents are allowed to do.  I think it’s also important to note that as Holly’s guardian, I have a legal duty to see Holly’s living conditions to ensure her wellbeing.

One-hour visit allowed in April

Susan said that on April 1, she was given permission to enter the residence for an hour because she needed to help pack Holly’s clothes for a trip to Florida. After being given a time for the visit that she couldn’t meet, she finally won approval for one hour on that Sunday.

Susan said she pushed back and said she needed two hours because Holly needed to try on clothes to see what fit.  She also needed to check to make sure Holly’s medication was correct.

Susan said that when she arrived that Easter Sunday at the residence, Krouk-Gordon arrived as well, and then spent some of her time right outside Holly’s room. Susan said Krouk-Gordon’s close presence made her feel uncomfortable and that she believes it was meant to intimidate her.

Eviction notice cites a fire drill policy that does not comply with regulations

Krouk-Gordon’s notice to Susan that Holly must leave the residence as of April 30 did not include any allegations that either Holly or Susan had acted in a disruptive manner. Instead, the March 20 eviction letter stated that Holly must leave because the home could not accommodate her need for assistance during nighttime fire drills at the residence.

Susan said that Holly needs assistance because her blood pressure drops significantly if she is woken up suddenly. As a result, she can suddenly faint and fall unless she is given water immediately after waking up.

Last November, Holly did fall after having been suddenly woken by the fire alarm, which had signaled a middle-of-the-night fire drill. She suffered a concussion and a black eye in the fall.

Susan said the staff made Holly finish the drill immediately after she regained consciousness, and did not take her to the emergency room. The incident and injury were not reported by the staff to the Disabled Persons Protection Commission, as required by law. And Susan wasn’t notified about the injury until  mid-morning the following day.

Susan contends that the danger posed by the fire drills could be solved either by adding a staff member to the group home at night to assist Holly, or by moving her bedroom to a currently empty room on the first floor in which she would have time to quickly drink a small bottle of water and still be able to exit with assistance within the required 2½ minutes. The front door to the residence is right outside that downstairs room.

Susan said, however, that neither TILL nor DDS have expressed support for her suggestions.

In failing to alter the existing fire drill policy, DDS and TILL would appear to be in violation of DDS regulations, which state that “providers of group homes “shall assure that …strategies are developed for meeting the specific and unique safety needs of each individual” (my emphasis).

In addition, the regulations state that “for sites where residential supports…are provided, safe evacuation is defined as assuring that all individuals can get out of the home in 2½ minutes, with or without assistance...” (my emphasis).

The implications of the regulations in this regard seem clear and unambiguous to us. The provider management cannot legally evict a resident because the home is not able to serve that resident in compliance with the regulations. The management instead needs to take steps to comply with the regulations.

Eviction notice did not comply with DDS transfer regulations

It also appears to us that Krouk-Gordon’s March 20 letter notifying Susan of Holly’s pending eviction did not comply with DDS transfer regulations, which require that Susan be provided with an official 45-day notice of a proposed transfer out of the group home.

Under the regulations, the written notice must include a statement explaining how the proposed move would result in improved services and supports and quality of life for Holly. The notice must also specify the location of the proposed home, include a statement that the parties may visit and examine the proposed home, and must further include a request for consent by Susan, as Holly’s guardian, to the proposed transfer.

None of those statements was included in the March 20 letter. As such, the letter does not, in our view, constitute a legal notice under the regulations to Susan of a pending transfer from the residence.

TILL never committed to addressing nutrition issues

Susan said that despite her efforts to work with TILL and with DDS to address the nutrition issues in the residence, TILL staff and management have not shown a consistent willingness to work with her.

Susan said that while the staff initially voiced agreement with her requests to improve Holly’s nutritional regimen, there was no follow-through. She personally developed recipes, grocery lists, and menus for all the residents covering six-periods. Yet, the items were often not purchased, and the recipes were not followed.

The group home at first agreed to allow a DDS nurse to work with Susan to put menus together. But then TILL management suddenly objected, and the nurse was taken off the project. “TILL didn’t like that she was doing the menus,” Susan said.

DDS then assigned a nutritionist to work with Holly, but the nutritionist’s approved hours were limited. Even with the system of checks that Susan and the nutritionist provided, the staff on more than one occasion bought a type of cheese for Holly that is strictly prohibited from her diet. “They weren’t following the recipes,” Susan said.

Susan said the staff recently took Holly to her primary care doctor for an exam, but had given her nothing to eat or drink that day. The doctor was so concerned, she recorded it in Holly’s medical record.

In another incident, the group home staff gave Holly a sandwich for lunch that included raw bacon. The manager at her work site, which is operated by The Northeast Arc, was so concerned, she wrote up a report of neglect, Susan said.

The September 5, 2017, report, which was provided to Susan by the work site, stated that, “During lunch, Holly had a BLT sandwich and she pulled the bacon from it ‘to save the best for last,’ and we noticed that it was raw.”  The worksite staffer who wrote the report stated that the worksite staff cooked the bacon in a microwave and monitored Holly for illness. Other than notifying Susan and the group home manager, the worksite took no further action in the matter.

Susan noted that she has been told that the families of the other residents in the group home are largely happy with the care there. But that may be, she said, because the other residents are higher functioning than Holly. The parents of one of the residents lives out of state, while another resident was working toward getting her driver’s license. Another resident is capable of using Boston’s MBTA system.

Unfortunately, this is the kind of case we hear about all too often. As we have said many times, the DDS group home system is broken. It is long overdue that the Legislature and its Joint Children, Families, and Persons with Disabilities Committee begin to address these issues.

In January, the Children and Families Committee held a hearing in which committee members gently queried Ryder about reports of widespread abuse and neglect in the DDS system. A large group of families and guardians attended the hearing, but none of those people were allowed to testify publicly.

We have to wonder what it will take to bring about needed action in this and so many similar cases.