Earlier this month, Inclusion Canada reached out to its provincial partner organizations to take the pulse of current family visitor policies and practices in residential settings supporting people with developmental disabilities across Canada. You can read their report here.  In a nutshell, there is no consistent approach across Canada, but we do see policies mirroring what is being promoted in other sectors, namely in Long Term Care (LTC). For the most part, people with developmental disabilities living in residential setingss are quite restricted right now in terms of who they can spend their time with, outside of their paid staff. This was done initially to reduce risk of exposure to COVID-19 and to save lives. And that is a good thing given that adults with developmental disabilities in residential settings are at greater risk for contracting COVID-19 and dying from it, but it came at a great cost. Moving forward, given that we will be living with COVID-19 for many months to come, we need to develop an approach nationally which is flexible and compassionate, and which considers different aspects of health for people with developmental disabilities, and not simply the prevention of COVID-19. This is consistent with international guidance and the Federal COVID-19 Disability Advisory Group.

Two weeks ago, the National Institute on Aging released “Finding the Right Balance: An Evidence-Informed Guidance Document to Support the Re-Opening of Canadian Long-Term Care Homes to Family Caregivers and Visitors during the COVID-19 Pandemic”. This document, national in scope, was developed with input from scholars, clinicians and advocates, and identified six core principles as fundamental to any guidelines on family caregivers and visitors. I would encourage decision makers in our field to read this document closely as they consider the Inclusion Canada brief. I review the 6 basic principles put forth in that report here, and further discuss them in relation to supporting people with developmental disabilities:

  1. Policies must differentiate between “family caregivers” and “general visitors”. Residents, substitute decision makers and their families should have the authority and autonomy to determine who is essential to support them in their care. 

This point speaks for itself. Family caregivers are #NotJustAVisitor but rather should be recognized as essential partners in care, whether it is health care in hospital, or in the community. Policies in every province and territory need to recognize this important distinction.

  • Restricted access to visiting must balance the risks of COVID-19 infection with the risks of social isolation to resident health, wellbeing and quality of life. 

The document explains, “It is essential that we also focus on the considerable detrimental effects of the ongoing lockdown of LTC homes and restricted access to family caregivers and general visitors…  Many residents have experienced severe and potentially irreversible functional and cognitive declines, deteriorations in physical and mental health, severe loneliness and social isolation, worsening of responsive behaviours and increased use of psychotropic medications and physical restraints… “ 

As a clinician-scientist who specializes in mental health and developmental disabilities, I am hearing from staff who work in our sector, as well as people with disabilities and families, about similar declines. Physical and mental health problems are common for people with developmental disabilities and the combination of restrictions and reduced access to proactive health care means these problems can get worse and new problems can emerge, sometimes unnoticed or untreated until they are quite severe. Whereas there are health care providers working in LTC settings, typical group homes for people with developmental disabilities do not have any health care providers working in them, making it even harder to monitor and detect changes in someone’s health, especially when they cannot self-report it. Whether we speak about “responsive behaviours”, or “behaviours that challenge”, these terms mean the same thing: all behaviour is communication and these behaviours are how someone, with limited means to do so, communicates their distress. Surveys of staff here and in other jurisdictions  have shown us that rates of such behaviours have increased since the pandemic began. Virtual interactions have been a lifeline for some individuals, but they cannot replace what has been lost and they do not work for everyone. Given staff reports of increased agitation, aggression and distress, I would not be surprised if there has been an increase in psychotropic medication use, at least in some individuals, which was already quite high prior to the pandemic. I believe that staff are doing their best to make this new way of living as positive as they can, but they have to do this while at the same time adhering to a number of new rules and regulations with regard to infection prevention and control.  Staff report that they are tired and anxious; they are lacking in additional resources, and they are doing their work for the most part without the help of families and other valued community members alongside them, because of current restrictions.

  • Visitor policies should prioritize equity over equality and be both flexible and compassionate. Whereas equality would mean giving all LTC residents the same access to visitors, equity means giving LTC residents the right amount of access they need to maintain their health and wellbeing.

Blanket policies will not work. Similar to many aging adults, especially those with dementia or complex medical issues, not everyone with developmental disabilities can adhere as easily to the same rules around masks and physical distancing, for example. We need to figure out on an individual basis, how to design plans which are built for success, where families can be together safely and without causing distress, if that is required to maintain health and wellbeing. There may be some trial and error in this process; however, I think families, individuals, staff and knowledgeable health care providers can work together to design personalized plans which can do this. We need to resource each agency, and each individual who cannot have visits yet as outlined, to find safe alternatives. And the time to do this is immediately, when community transmission is low. I have seen examples of flexible and supportive plans but there is no mechanism to share information about how different agencies are approaching these matters, and also not every agency or every individual has the same access to creative teams to design such solutions. That should be our priority. 

  • Governments, public health authorities and LTC homes must provide regular, transparent, accessible and evidence-based communication and direction about visitor policies and access.

As noted in the Inclusion Canada report, finding this information can be quite challenging. Once found, it can be very confusing to understand what the policies are. Agencies do share information about the policies and how they will be implemented with families, but there is some variation in what is shared, and how quickly it is shared. The policies are not developed in an easy read or easy English format so that the residents themselves can understand the rules they have to abide by. 

  • Robust data related to re-opening LTC homes to family caregivers and general visitors should be collected and reported.

There has been lots of attention paid to the importance of these data in LTC. As data are shared in the public domain, we can all learn about strategies that work and strategies that are not successful. For example, we learned last month that expanding family visitor policies in the Netherlands was positive in terms of resident well-being and did not lead to any additional COVID-19 infections. Sadly, we are not reporting on people with developmental disabilities who live in residential care in the same way as we report on people who live in LTC. “If we don’t count, they don’t count.” We have seen too many examples already of people with disabilities being forgotten in pandemic responses. But if we do not find ways to collect this information about how residences fare as re-opening progresses, we won’t be able to learn and improve what we are doing. 

  • A mechanism for feedback and a process for rapid appeals should be established.

Similar to those in LTC, individuals with developmental disabilities living in residential care settings and their families need to know who they can speak with if there is a concern. And it needs to happen quickly. 

The Inclusion Canada brief is a first step in documenting what is occurring across Canada with regard to family involvement of adults with developmental disabilities in residential settings as our communities re-open. I really hope we can “learn from our elders”, and also speak with and learn from each other about how we can best reintegrate families into the lives of people with developmental disabilities receiving residential supports at this critical time.  Now is a time to be sharing what does work, and making sure that supports are in place for those in residential care so that they can live as safely and happily as currently possible.    

Yona Lunsky is Director of the Health Care Access and Developmental Disabilities Program (www.hcardd.ca) and the Azrieli Adult Neurodevelopmental Centre at the Centre for Addiction and Mental Health (www.camh.ca)