COFAR blog

Limited visits by family members to loved ones in the Department of Developmental Services (DDS) residential system began last week, technically ending the COVID-19 lockdown.

But we have gotten reports that some of the restrictions placed on those visits have been onerous and others inconsistently applied.

While some families have reported that their first visits went very well, others have had problems. There appears to be a lack of consistency in how different providers are treating the same types of situations.

On Monday, COFAR Executive Director Colleen Lutkevich and President Thomas Frain sent an email to DDS Commissioner Jane Ryder, pointing out concerns about the process, and about highly restrictive DDS visitation guidelines  that the Department issued last week to families.

When we first read the visitation guidelines, we were immediately concerned that their restrictive nature and the large amount of discretion given to providers might result in inappropriate or unnecessary bans on family contact.

We are also concerned that at the same time that DDS has begun allowing family visitation, the Department appears unconcerned that the rate of testing in the residential system for the virus has slowed down to a practical standstill.

During this past week, we have received reports that appear to bear out our concerns about the visitation restrictions.

In one case, a parent said she was told she cannot visit her son, who she hasn’t seen since the lockdown began in March, because some of the residents in his group home had tested positive after being retested. Because her son has consistently tested negative, she asked the provider if her son could have an off-site visit with her, but her request was denied. She said the provider told her DDS has forbidden off-site visits.

That reported statement by the group home provider about off-site visits appears to contradict DDS’s position as we understand it. On June 8, DDS Ombudsman Christopher Klaskin stated to us in an email that even prior to the resumption of the currently limited visitation, “group homes were not fully locked down, enabling providers to take individuals for walks or even on short outings (to parks, drive through restaurants).”

It doesn’t make sense to us that even during the lockdown, residents were taken off site to commercial establishments in which they presumably were brought into proximity with strangers who may or may not have been wearing masks. Yet now, during a resumption of family visitation, residents are not allowed to have off-site visits with their families, and some providers are not allowing family members to take residents off site even to parks or places free of other people.

Given that off-site visits to commercial establishments have been allowed all along, off-site visits with family members should be permitted as well, Frain and Lutkevich stated in their email to Ryder.

In one case, a parent got mixed messages from two different supervisors in her son’s group home. One supervisor said she could not walk with her son on the sidewalk in front of the house, while another supervisor said she could do that. She said she would love to drive her son to a park to walk, but was told she is not allowed to take him in her car.

Meanwhile, another parent said the staff of a group home took his daughter and another resident out for “a very long walk around a scenic park next to the home.”

Another parent said that prior to the lockdown in March, her daughter was used to coming home every weekend, “and is emotionally getting affected at this point severely.”  She added that not only is her daughter not allowed to come home even now, “they (the group home staff) aren’t even doing outings.”

The mother of a resident at the Hogan Regional Center said she had been scheduled to visit her son on June 10 for a half hour outside with masks on. But she received a call and email the night before informing her that the visit was put on hold because a resident in a different building had tested positive for COVID-19, and that all visits were on hold.

The woman then asked if her son could be allowed out on the screened porch in his wheelchair at the facility while she stood outside on the lawn “just to see him and him hear my voice.” She was told that was not allowed.

Another parent told us her child has not had a hug and most likely little to no human touch since mid-March.  She was told by her provider that she cannot bring a birthday cake to share with her daughter even while they are outside and 6 feet apart.

The woman in that case said she offered to stay 15 feet away while eating, but was told that was not allowable because she and her daughter would have to remove their masks to eat. Yet, during the lockdown, the same provider was taking the woman’s daughter to fast food restaurants and other commercial establishments.

Lutkevich and Frain suggested that DDS send guidance to the providers on how to handle the resumption of visitation. They noted that DDS has sent very restrictive guidelines only to families.

“Given the discretion that the providers have under those guidelines, we think the providers actually need to be told that families should be treated with respect in these circumstances,” Lutkevich and Frain stated.

Lutkevich and Frain added that the types of apparent inconsistencies in restrictions they described “need to be addressed, and common sense needs to prevail.”

For instance, they said, providers need to be told that families are allowed to take their loved ones off site if it can be done safely. That appears to be DDS’s position, as we understand it, but some providers apparently don’t seem to know that.

What this all seems to highlight is an ongoing pattern in which DDS places burdens on families in the stated interest of furthering the safety of the residents while avoiding anything that can be seen as burdensome on providers.

Why place difficult restrictions on visits by families to group homes while, at the same time, failing to ensure that timely testing for the virus is taking place in those facilities? What purpose does it serve other than prolonging the suffering that people have been enduring for months now?