Published on September 1st, 2016 | from CAMH
Giving adults with developmental disabilities a place to turn to
By Dr. Yona Lunsky, Clinician Scientist in Adult Neurodevelopmental Services and Director of the Health Care Access Research and Developmental Disabilities (H-CARDD) Program
Last week, The Ontario Ombudsman released its report Nowhere to Turn: Investigation into the Ministry of Community and Social Services’ (MCSS) response to situations of crisis involving adults with developmental disabilities, following an in depth investigation which began in November 2012. The investigation, which included 1436 complaints, 221 interviews, and the review of over 25,000 documents, unveiled a fragmented and confusing service system, with hundreds of agencies and processes which are difficult to navigate, and where the demand far outstrips the supply.
The report notes that “The stories of hopelessness and despair canvassed in this report are compelling, tragic, and regrettably, just the tip of the iceberg (p128).” They include stories of abuse and neglect, inappropriate hospitalizations and placements in long term care, incarceration, and family abandonment. This report, and the 60 recommendations it contains, was directed toward MCSS, assigning responsibility to the ministry to make sure that change happens, and a group of extremely vulnerable Ontarians can move out of crisis. On the positive side, MCSS accepted all 60 recommendations and is responsible for reporting back to the Ombudsman on progress made every six months until adequate steps have been taken.
But let’s not kid ourselves. The crisis described in this dense 140-page report is more than a crisis within social services. It is as much a mental health crisis for those with developmental disabilities, and for those who care for them. Consider this:
- Sixteen of the eighteen case studies described significant mental health issues and /or challenging behaviour (most commonly, aggression to others). The term “dual diagnosis” is used repeatedly throughout the report and I would argue that ineffective treatment of mental health difficulties and behavioural challenges contributed significantly to crises.
- Many of the case studies described caregivers who were severely stressed, sometimes despondent and no longer able to provide care. In extreme cases, this could result in neglect, abuse, or abandonment. Some of these caregivers developed mental health conditions that interfered with their ability to function day-to-day. A failure to recognize, address and monitor their mental health issues and general compassion fatigue contributed to crises.
- The crises themselves were highly traumatic, thus leading to the onset, and certainly the exacerbation, of mental health issues for both the individuals with disabilities and their caregivers.
We, as mental health providers, need to familiarize ourselves with this report and consider specific recommendations that would apply to mental health services. I challenge everyone involved in mental health care to read the report and ask: “What role might we have played in contributing to this crisis, and what role can we play in moving toward solutions?” Both the Ombudsman’s Office and MCSS recognize that solutions require inter-sectoral collaboration. Health service providers are key players in the changes to be made. We can also take a leadership role in fostering such collaborations locally and provincially. Here are some suggested recommendations that I have, as a starting point:
- Knowing that adults with developmental disabilities are more prone to developing mental health issues than other adults, our mental health promotion efforts need to include them. We should be investing in screening for mental health issues and early intervention. We should play an active role in helping them obtain an accurate diagnosis, and in offering evidence-informed treatments. This means that all mental health care providers require some basic skills to support those with developmental disabilities, and that specialist mental health services need to be accessible across Ontario.
- We need to screen for abuse in all of the adults with developmental disabilities that we serve, and follow new processes to be implemented in the Fall of 2016 to monitor and report on suspected abuse and neglect in this population.
- Repeated emergency visits and lengthy hospitalizations could perhaps be reduced or avoided if we could deliver more extensive outpatient-based mental health care to those in need of it. At the very least, we could engage with the appropriate community linkages and work in partnership with them once anyone with a developmental disability is hospitalized with mental health issues, to plan for safe discharges with the appropriate mental health supports in place.
- Appropriate behaviour analytic supports must be available to help us determine the function of challenging behaviours, to safely manage them, and to teach skills to promote effective communication and independence. This requires clinical input to understand potential medical and environmental contributors, both in the community and in hospitals and long term care. There is no “one size fits all” treatment for self-injury or aggression toward others. But without understanding what the contributors are, on a case by case basis, we are limited to management, not treatment or therapy. Clinical expertise in addressing challenging behaviour is critical to preventing and managing crises in this sector.
- The report highlights how significant life events such as abuse, the death of a loved one, or a major disruption in routine can trigger crisis and lead to emergency department use, loss of housing, hospitalization and even incarceration. We need to take a trauma-informed approach when supporting those with developmental disabilities, and consider the many events that can occur which are beyond their control but that can impact them, whether or not they can verbalize it.
- Screen for mental health issues and compassion fatigue in all caregivers, whether they’re family members or paid caregivers. We play a role in identifying these concerns and helping caregivers to get the help they need, even if we can’t provide it ourselves.
- For those caregivers who need it, offer mental health services. Even when we can’t immediately change difficult situations, we can offer supports and treatments that help people to cope with what is difficult. Many of these caregivers are traumatized by the crises they experience, whether it is about making a heart breaking decision, watching their family member suffer, or being severely injured during an aggressive episode. We must take a trauma-informed approach in our interactions with them.
This report is a detailed critique of a system that has been failing some of our most vulnerable citizens. “It is often said that societies are judged on how they treat the most vulnerable of their members. The time has come to move beyond apologies and work towards a consistent, co-ordinated, collaborative, and responsive developmental services system, able to effectively and humanely meet the needs of individuals and families in crisis (p5).” Both within the mental health sector, and beyond it, there is lots of good work happening to try to deal as best we can with a tragic situation. Today we have an opportunity to work together with government to do more. Let’s learn from the courageous individuals and their families who came forward to tell their stories and be part of a dialogue about how to do things better.
For more information on dual diagnosis resources, see https://www.porticonetwork.ca/treatments/disorders-qr/dual-diagnosis/dual-diagnosis-resources and for more information on H-CARDD research and clinical tools and resources, see www.hcardd.ca