Essential Elements of Specialized Service Systems for People with Developmental Disabilities and Challenging Behaviours 

Lessons learned on the ground, in the front-lines, in Geneva Switzerland and Canada, from senior management, clinical work and consulting perspectives, over the past 50 years.

© Jacques Pelletier, BSc, MPA, PsyD. 

This article is dedicated to the memory of Ashley Smith, who died in her cell in a women's prison, October 19, 2007. Her fate is not unlike many others who have ended up in the prison system for lack of intelligent supports and services in the community for persons with developmental disabilities and mental health/behavioral disorders.

TARGET CLIENTELE

The primary clients I refer to are adults with intellectual and developmental disabilities (IDD), co-morbid with mental illnesses ard/or other mental health conditions who show significant levels of behaviours that challenge (BTC). It used to be many of these persons would be housed in segregated facilities, institutions for disabled individuals. Today they struggle to find the right supports and services in their communities now that these former institutions have been closed. And, unfortunately, because we are only beginning to address this reality, they often wind up being incarcerated or hospitalized in forensic facilities, in and out of emergencies, locked up in inappropriate environments with staff that are not well trained or supported and condemned to never-ending behavioural programs and approaches that do nothing to give them a life. They are often in worse shape than those who were improperly cared for in the old institutions. They are the persons who often get referred to community programs of "last resort", services that are often restricted to facility-based approaches, or limited to one or two programs or services, usually behavioral interventions mixed with restrictions, and psychiatric consultations and medication. They are the neediest, the most complex to support, oftentimes the most dangerous to themselves and their environments. They are the litmus test of our service systems, and we are finally beginning to understand how to best support them. Increasingly we are finding better ways. It is possible to offer adapted supports and services to these persons.

The secondary clients I refer to are agencies and families/care givers, that are at the end of their rope, and ask for help because they cannot properly care and/or support and/or relate to a person that, at some point and for some time, has encountered severe challenging behaviour/mental health challenges. They need help when they need it: now. Families and caregivers are at times at a loss as to how to relate to the individuals they care for when they show challenging behaviour, and, more often than not, their lack of knowledge and the living environments they offer are the root causes of many of the problems these persons encounter.

CHALLENGING BEHAVIOUR

Professor Eric Emerson has defined challenging behaviour as: “Culturally abnormal behaviour(s) of such an intensity, frequency or duration that the physical safety of the person or others is likely to be placed in serious jeopardy, or behaviour which is likely to seriously limit use of, or result in the person being denied access to, ordinary community facilities.” (Emerson, 1995, cited in Emerson, E (2001, 2nd edition): Challenging Behaviour: Analysis and intervention in people with learning disabilities. Cambridge University Press.)

Challenging behaviour can occur because a person feels bad, depressed, angry, frustrated, alone, isolated, or at times because a person is hurting or doesn’t feel well physically. It can also occur because a person is uncomfortable with ambient noise, light, textures and needs some form of “break” or “escape”; or perhaps because a person’s basic needs such as sexual or security needs are not met. Challenging behavior can also appear because a person needs attention, whether positive or negative; because of conditions such as epilepsy, trauma, as well as specific syndromes, or mental disorders; because of pain or discomfort caused by physical conditions such as poor oral health, ear infections, ingrown toenails, constipation; and because a person does not have verbal communication skills to inform caregivers. Challenging behaviours can also be a way to communicate distress of some kind to caregivers. Perhaps all of the above could help explain a person's "challenging behaviours".

This list is not exhaustive. Bottom line: challenging behaviours occur for a reason.

Two of the most common challenging behaviours shown at times by persons with developmental disabilities are aggression and self-injury. Other behaviours that can be of concern involve any kind of sexually inappropriate behaviour.

Source: Care, Support and Treatment of People with Developmental Disabilities and Challenging Behaviour, Jacques Pelletier, Editor - http://www.community-networks.ca

WHAT THIS CLIENTELE DOES NOT USUALLY NEED

Caregivers, whether families, agencies, acute care hospitals, prisons or Courts, are often looking for quick fixes that will either “cure”, "discharge", “admit” or "commit" these challenged individuals. Oftentimes community services not well versed in this field will offer such quick fixes: “a psychiatric consultation with subsequent medication and long term follow up fix”; “a behavioral plan fix” that requires a never ending commitment to said plan; “a new placement fix”; a "visit to an emergency ward and quick discharge once "stabilized" fix”; “repeated encounters with police and taser fixes”; "yet another evaluation but no treatment" fix. These “fixes” by themselves are often unavoidable and at times useful but they unfortunately become the essential supports and services instead of being parts of a tool kit. They offer legitimate but temporary relief, not long term, adapted, integrated supports and clinical services that will help them and their caregivers in an ongoing, individualized, dynamic fashion.

A COMPREHENSIVE SPECIALIZED SUPPORTS AND SERVICES SYSTEM DEDICATED TO INDIVIDUALS WITH CHALLENGING BEHAVIOURS

The first thing concerned persons need is access to a comprehensive service system that will start offering competent, understanding, empathetic, bio-psychosocial services and supports the moment intake starts. They need a system that considers them legitimate, although complex/extremely complex clients. They need commitment from their service providers as well as systemic intelligence, life-long. They need a service system aimed at supporting, treating, healing challenged persons and their caregivers. Such a service should not be, nor be seen as, nor be used as, a service of “last resort”. It should be part of a continuum.

COMPREHENSIVE, DECENTRALIZED, MOBILE INTAKE AND ASSESSMENT SERVICES

Contemporary, state of the art intake services in community-based social and health services function as comprehensive assessment services that offer initial assistance, services and supports to persons in need. They are not an intake service that leads to an evaluation and an admission somewhere, or into a program of some sort. An intake worker for instance, with the support of colleagues, should be in a position to offer initial guidance, support and hands-on services. In other words, a specialized support and services agency should start offering hands-on services the moment legitimate clients request help. This implies that some clinical services need to be offered at times in a decentralized fashion, especially at the onset. And this implies flow management of clients/patients through assignments.

Services and supports should be offered immediately on intake as service enhancements. This requires flexibility and adaptation to each unique situation. It starts with a view to immediately enhance services and supports to challenging individuals and their care givers rather than admitting them in a program or giving them an appointment to eventually see a specialist. This initial component is oriented to reinforcing and assisting, as necessary, caregivers and primary care and social services providers in delivering optimal care for clients. This means: offering an initial, on demand consultation to interpret, explain and act on symptoms; interpreting and explaining the presentation of symptoms, including by collecting a past history; discussing diagnoses and treatment & supports plans; offering quick access to specialists; developing a more substantial information base as required (it is not always required); assuring follow-ups with concerned parties; preparing accurate, complete, and up-to-date medical, social and psychological information for monitoring the results of the initial and subsequent support/treatment plans, as well as being in contact on an as-needed basis with families, agency staff, and the primary care providers.

The initial intake support plan should be in place immediately; an initial diagnostic evaluation should usually be completed within two days of testing, and include the following diagnostic services: a preliminary psychological evaluation, a preliminary medical evaluation and referrals to medical specialists if needed (internal medicine, dentist, podiatrist, psychiatrist, etc.), as well as requests for basic lab tests (blood, etc.), an initial consultation, if needed, with another clinician/allied professional, such as a Speech & Language Pathologist, an Occupational Therapist, a Nurse Practitioner, etc. At the same time, a more long-term, individualized, flexible support plan should be developed and activated if needed. The results of the initial diagnostic services and the initial support plans, as well as subsequent and potentially more comprehensive ones are compiled and presented as an interdisciplinary report. Following the evaluation, family and/or caregivers conferences are offered at the client's request.

Allied professions (OT, SLP, Nurse, psychologist, etc.) should have situations assigned to them from the start, not months after a person has started receiving services from the program. The team (support workers and salaried clinicians in particular, but also some consultants) should be called upon to concentrate its efforts collectively on specific situations with high need clients, when this is called for.

It is my experience that such quick, concentrated efforts at the onset are all of what 30% of referred clients need. Thus, intake becomes a support service in itself that helps solve some 1/3 of situations. This generates capacity to better serve the 70% that will need ongoing specialized flexible supports and services.

A FLEXIBLE SPECIALIZED ACCOMMODATIONS APPROACH

Beds are needed, but, as much as is possible and feasible, they should not be congregated in one facility. A single facility-based approach will simply implode after a short time: the beds will be filled, resources will be basically invested in these filled beds, a waiting list will ensue. People will be "treated" but only to be eventually returned to the environments where the problems occurred, or to the environments that are the source of the problems. Many never return and stay in the so-called “treatment beds”. Fixed beds should be diverse in nature and, as much as possible, be located in many environments. A mix of facility-based treatment beds and community-based service systems and networks will likely be more successful. By many environments I mean urban, sub-urban, rural: some people can be dangerous at times and often we exacerbate that danger by developing specialized homes in neighbourhoods where the so-called danger becomes such an issue people spend their lives in basements, with regular police/ambulance interventions.

In Geneva we have worked on systems of dedicated beds in hospital settings for individuals that can self-admit as needed. Some hospitals in Ontario, while not necessarily dedicating beds to this clientele, do guarantee access when needed. Hospital beds do not necessarily mean mental health beds, but simply hospital beds. This client group has the potential for many ailments that cause pain and discomfort and that create behaviour challenges, such as aggression and self-injury. Some fixed beds can be used for medical treatment. Other fixed beds can be used for crisis prevention, or post-crisis breathers. Caregivers will absolutely need time-off, respite and vacations. And so will the people they care for: living in a group home can be difficult at times, so vulnerable individuals with complex needs should get a break once in a while. And these breaks or "good times" should not be contingent on "good behaviors". The author is a cigar and Scotch / Bourbon aficionado: he will enjoy, in moderation (...), his cigar and whiskey whether or not he has been on his best behavior that day, week or month... It seems to me this is how the real world operates, and persons with high and complex needs should be part of the real world.

Specialized service systems need to be creative. Sometimes one needs to "get out of town". Over the years I have collaborated in the development of services that are basically "credit card" services: at any given time, resource workers are available, ready, willing and able to take the agency card and go somewhere with someone: a fishing trip at a secluded spot, or a few days in a big city for example. Persons might have complex needs, but their needs are no different than other human beings, and these needs have to be fulfilled, or else... We “only” need to adapt how we help people with challenging behaviours fulfill their needs.

A MULTIDISCIPLINARY, HOLISTIC, BIO-PSYCHO-SOCIAL APPROACH AND USE OF SPECIALIZED RESOURCES

My opinion, based on experience and empirical evidence, is that aggression and self-injury are essentially means of communication. We need to try and understand what the person is trying to communicate. In 50 years of working with agencies that serve this population, I have met thousands of individuals with behaviours that challenged their environments and themselves. I have not met more than a dozen individuals whom I would consider inherently too challenging for quality community-based services allied with specialized services. The rest of the persons I have encountered either, (1) had untreated physical ailments that were painful (teeth, ingrown toe-nails, ear infections and chronic constipation top my list of why persons who have great difficulty communicating verbally can be very aggressive at times or self-injure; (2) were subjected to sub-par living conditions in ugly, uncomfortable environments; (3) were subjected in their living environments to too much control, too many staff, stupid and unfair rules that shouldn't apply to adults; (4) were victims of skewed perceptions transforming normal human behavior and relationships into "problems", accidents into "incidents"; (5) were forced to live artificial lives, in artificial circumstances; (6) were living in environments that did not provide them with autonomy to move, to manage their lives; (7) were living in neighborhoods where their behaviors were dangerous and therefore made them "dangerous"; (8) had been conditioned over long periods of time to be aggressive, to self-injure; (9) had not been diagnosed properly, if at all, from a mental health perspective; (10) had received no psychiatric/mental health, bio-psycho-social treatment after being diagnosed with a psychiatric condition. Very often, it was a combination of some of these factors if not all of them.

A NETWORK APPROACH

No single agency, no single professional, no single technique can be successful on its own. Responding to the needs of persons with developmental disabilities and significant mental health/challenging behaviours in their communities requires teamwork. It requires a fixed point of responsibility, usually a specialized services and supports agency or program specializing with this population, access to health services (hospitals, primary care professionals, specialized medical services, health networks, emergency wards), emergency responders, justice  services (Judges, Crown and Defense attorneys, police, prison personnel, parole officers, half-way homes, shelters, allied services (psychology, speech pathology, occupational therapy), caregivers, whether families or agencies, etc. My list is not exhaustive. And for every individual served, a network needs to be activated. A systemic approach to networking has been in place for this population in Ontario for the past 5 years. Four Community Networks for Specialized Care (CNSCs) cover the province; it’s a start, but we need to continue making them more effective

FLEXIBLE FUNDING

Governments need to understand that the most critical success factor in such contemporary services is to ensure that some of the funding is flexible. Non-programmed or attached sums that can be used, as needed, when needed, are the most single important factor in the success of the agency I helped develop in Ottawa, Solution-s. To avoid crisis situations or to avoid escalation in crisis situations, we need to help service agencies respond in a timely fashion and adapt to each individual.

REAL AND BEAUTIFUL

Environments should be true to their nature and care should be given to their beauty and esthetics. Beautiful environments will elicit more beauty than ugliness from persons who live in them. In Geneva, an association I am affiliated with, T-INTERACTIONS (an association that is not publicly funded and essentially thrives on its businesses that employ in part individuals with complex needs - psychiatric disabilities - chronic unemployment, etc.) has developed businesses in the mid to high-end quality restaurant and hotel sector. They are all beautiful places that cater to clients who pay significant money to eat and stay in these establishments. Its hotel, Hotel Pension Silva, located near the United Nations, is a small, 41 room hotel, that reserves 12 rooms for persons with severe mental health and developmental disabilities who live for up to two years at the hotel in its "pension" form, often straight from long-term psychiatric or prison internment. The 12 rooms are dispersed on the 7 floors. The rest of the rooms are rented out to tourists or diplomats. After almost 15 years, there still is no damage to the interior where a well-known artist, Gérald Poussin (Paris-New York murals) painted it as a work of art. Many pensioners upon arrival at the hotel mention it’s the first time in their lives they have been proposed such a beautiful environment to live in. And they act accordingly. The only bad incidents have come from tourists. It is not always easy, sometimes it is quite difficult, but the environment and the intelligence of the hotel staff (no human service workers are working at the hotel, just well-coached and supported hotel pros) make it possible.

There is nothing like a classy diplomat, educated in the best schools, dressed in her Cartier outfit, preciously and gracefully eating her breakfast in the hotel dining room to help spruce up one's table manners: no need for behavior modification programs; at the end of the week, newly arrived pensioners eat much more like her (and also try to look and smell as good) than she does like them...

Jobs should be real. They should provide opportunities to learn as well as competitive salaries. In Geneva we have specialized in the hotel and restaurant sector, as previously mentioned. This sector provides many opportunities for valued work, as well as being lucrative. But this is not for everyone. We also have less lucrative businesses such as a printing and book editing company, a building renovation company, and a vegetable garden operation that sells bio certified vegetables to area restaurants as well as 200 individual clients (shareholders) who, for an annual share, get weekly deliveries, at home, of fresh seasonal vegetables.

Life should be real! People have personal lives, public lives, sex lives, family lives. They live at home, where, in their privacy, they are Kings and Queens. They take holidays, go on trips. People enjoy the good things in life not because they "behaved well" but because it’s human nature to enjoy the moment. We don't need to be perfect to access the good things in life. I don’t need to have behaved well during the day to enjoy my "good things in life". I am convinced persons with the sort of complex needs I am referring to in this article do not differ from others that are graced with normal human frailties when it comes to enjoying life. We just need to be smarter and offer concrete supports and services that will help them enjoy their lives.

PEOPLE NEED RELATIONSHIPS ON TOP OF EVERYTHING ELSE

Most persons around these individuals should be ordinary, non-professional people (supported by professionals and clinicians). For years we have fought off pressure to teach workers in our Geneva businesses about psychiatric conditions. To this day we believe that co-workers and managers should not be anything else than co-workers and managers: and that is what makes work "real". People need friends, not people who are paid to be their friends (although paid friends can be critical at times). They need family. They need ordinary Jacks and Jills with them.

This, more than anything else, will help these very special persons live lives of the highest quality possible.

COMMITMENT

It is crucial to recognize these individuals and their needs.

It is crucial to have true commitment, at all levels, to help these individuals lead lives of quality, within their potential and limits.

It is crucial to have the commitment to do things differently.

It is crucial to have passion.

There are no miracles. Plans will never work as written. Back to the drawing board. Back again. Listen with objective ears. Get help to think outside the box.

DO NOT BE AFRAID TO PROPOSE HYPOTHESES

For years John trashed his apartment after living in it, comfortably, for a year - every year, a trashed apartment. He was blacklisted until someone in the service agency had this hypothesis: could it be that John wants to move out after a certain time? Could it be that John doesn't want to stay too long in the same place? Could it be the only way he knows how to ask to leave his apartment is by thrashing it? So, the service agency helped John find apartments with a one-year lease: hypothesis confirmed. After a few years, there was no need for him to trash his apartment in order to live elsewhere. And his behaviour is nothing strange for me because I have moved very often in my life. 40% of French Canadian Montrealers who lease apartments move to a new apartment every June 30... No need for psychotherapy or a behavior plan, just good movers, pizza and beer, time, humour and good friends.

It’s important to have hypotheses: statements that we verify, confirm or infirm. We need to take a second, third, 1'000th look from outside our boxes.

© Jacques Pelletier, PsyD, Bureau Conseil Jacques Pelletier / BCJP Consulting 2013, 2016, 2018, 2021. All rights reserved.

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