The Forgotten Ones in Group Homes?
What happens to families when residents of group homes are not allowed to leave and parents can't visit during COVID-19 restrictions?
Imagine that your son or daughter with special needs, living in a group home, believes you have abandoned him/her. Across the country, this is not uncommon during coronavirus mandates. Many parents in this situation have not been allowed to visit the residential home where their loved one lives. The residents are not allowed to leave either, which leaves everyone involved feeling frustrated, sad, and scared.
A group home, also known as an adult residential facility, is a residence model of care for those with complex needs and/or developmental disabilities. In some cases, these facilities can provide medical care for residents with health challenges. From coast to coast, residents with special needs living in group homes have been inside for three to four months already and have not seen their families in person for that long.
In New York, one such family experiencing complete separation from their loved one living in a group home worked with lawmakers to send Governor Cuomo a letter in which they pleaded for visitation plans to be developed. For months, their adult son with disabilities has not visited with his parents and has not been allowed to go home for the weekends.
“We could get screened at the door, get our temperatures taken, wear masks…” said Mona Guerrera, mother to a 34-year-old living in a group home. Her frustration and sadness is justified. She and her husband have not been allowed to visit with their son since the pandemic began.
Yet, the only reply to her pleas has been a statement recognizing how challenging the suspension of visits, services, and outings has been. This just doesn't improve the situation or make her son feel better about his isolation.
About 38,000 New Yorkers live in 7,250 group homes which are regulated by the state Office for People with Developmental Disabilities. Around the country, families whose loved ones reside in a group home have been kept from seeing their son or daughter, except in some cases through a window. Parents have resorted to Skype, FaceTime, and Zoom to "visit" with their son or daughter, but in some cases, this type of interaction can be confusing and frustrating to the person with special needs. Parents say they just don't even interact online or through a window because it is simply too upsetting for their child.
Another New York family, who routinely picks up their son from his group home for the weekends, has tried to explain over FaceTime why their son can’t come home. The parents state that every other business is formulating plans for reopening, but group homes haven’t even started that yet. Residents can't leave, and visitors can't come in.
Such restrictions and lack of communication and support have prompted letters, online petitions, and even quarrels. It’s not just about visits but also the lack of programs, services, rehabilitation activities, group events, and community outings. These daily activities in the lives of teens and adults living in group homes are critical to their happiness. Across the country, these essential daily routines have come to a halt, and there is no indication about when things will go back to normal.
One complicating factor (in New York, at least) is that the state does not make group homes regularly test employees for COVID-19 like nursing homes are required to do. It is up to employees to track their own temperatures and make decisions about reporting to work.
Parents and their special needs children living who are living in group homes have become somewhat of a forgotten group during this ongoing pandemic. Some homes have been allowing "window visits" but this can easily backfire as some residents do not understand why they can't hug their parents. Without clear plans for restoring visits, many are suffering emotional trauma. Being separated for so long is hard on everyone. Parents are worried that their children feel abandoned.
On the West Coast, families are facing similar dilemmas. Parents are waiting for the regulatory agencies to develop guidelines about visitations, community outings, and so forth, and progress has been very slow. Parents in California have been frustrated with the Department of Social Services who are the ultimate authority on clients' rights, visitation, etc. Facilities have a duty to keep their residents safe, yet without clear and consistent guidelines it is difficult to make decisions about visits and outings.
In some cases, group homes have allowed parents to be in the physical presence of their loved one under the rule that they remain six feet apart and wear a mask. However, in the case of developmental disabilities, some may not understand the "rules" and want to hug their parents (of course!). When that is forbidden, what is a parent to do?
As businesses of all kinds re-open from coast to coast, they are under state and/or federal mandates about their reopening. Group homes across the country are, generally speaking, being left in the dark when it comes to guidelines about their reopening. This has meant continued distance of family members and isolation for the residents of the group homes.
In situations such as this, it helps to have solid plans and clear communication with those entrusted to the care of your son or daughter with special needs. VestLife can help parents with those plans, providing an easy way to manage, store, and access important information about your child and his/her care. By sharing select information with caregivers at group homes, parents can rest a bit easier knowing that those responsible for their child's care have the detailed and critical information they need to provide comfort, security, safety, and more, when the parents cannot be there in person.
If your son or daughter resides in a group home where visits are not allowed, and your child cannot be released to come home, how are you coping? What toll is this taking on your family? Please share your comments below.