NB reluctantly at times, but ultimately wholeheartedly, responded well to autism parent advocacy which resulted in an internationally recognized early autism intervention services program, autism trained teacher aides and resource teachers and the reversal of the decision to close the Stan Cassidy Centre Autism Team. Badly needed adult autism care and treatment has been more difficult to advance. 3 years ago NB autism expert Paul McDonnell who provided much of the intellectual guidance that was of invaluable assistance and expertise in our autism advocacy, together with parent autism advocates Cynthia Bartlett and myself met with then social development minister Cathy Rogers and presented the New Brunswick Autism Spectrum Village proposal which built on those successes enjoyed by NB children and youth today. The proposal called for a network of enhanced autism group homes built around a Fredericton based centre that would provide training, oversight, continuing education, and residential care and treatment for those most in need.
Studies and reports such as the
Autistica UK Personal Tragedies, Public Crisis have documented the reality of reduced life expectancy on the autism spectrum with those with autism and intellectual disability living, on average 30 years less than the general population and those with autism without ID living 9 fewer years on average.
It is time, it is long past time, for caring persons in government and the community to endorse the NB Autism Spectrum Village Proposal and move forward to help NBers with autism spectrum disorder live longer more enhanced and positive lives.
The New Brunswick Autism Spectrum Village
It Takes a Village to Support Adults with Autism Spectrum Disorder
NEW BRUNSWICK SATELLITE MODEL FOR
ASD SERVICES FOR ADULTS
New Brunswick has made great gains in providing early intervention programmes for children with
autism spectrum disorder (ASD), a neurological disorder, and is currently developing a
comprehensive programme to train teachers and teacher assistants within the province to work in an
effective manner with our students. To date, no initiatives have addressed the needs of adults.
Once a student reaches the age of 21 years, there are no services, no supports, and the entire
burden of support and care falls upon parents and family.
It is therefore imperative that New Brunswick establishes an Autism Treatment and Residential
Centre. The centre should be situated in Fredericton so that it is physically close to regional
autism expertise at the UNB-CEL autism program and the Stan Cassidy Centre. The Centre would
provide treatment for all autistic adults who are too old for treatment at the Stan Cassidy program
and permanent residential care for the most severely autistic some of whom have been sent to the
Spurwink Facility in the State of Maine and to the Restigouche Regional Psychiatric Hospital in
Campbellton. Autism specific group homes around the province are required with autism trained
staff and oversight from the Centre. In this sense, the model proposed could be characterized as a
“satellite” model in which the centre in Fredericton would be linked directly to a number of
satellite homes around the province. Medical issues commonly associated with autism disorders
including epilepsy and depression would also be treated in the context of persons suffering from
autism and the extra challenges it presents to treating those common co-morbid conditions.
The scope of the problem can be appreciated when one considers the fact that autism spectrum
disorder is the single largest disability across Canada. Current estimates of the number of
individuals diagnosed with autism spectrum disorder range from the recent estimate by the Center
for Disease Control in the USA of 1 per 68 persons1 to slightly more conservative estimates around
1/1602. This means that the incidence of autism spectrum disorders ranges from 4700 to 11,100
individuals in New Brunswick. It also means that services are needed for roughly 3,300 to 7900 are
in the age range between 22 years and 75 years.
1CDC, Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — United States, 2010,
March 28, 2014 / 63;1-21
2Elsabbagh M, Divan G, Yun-Joo Koh YJ et al.. Global prevalence of autism and other pervasive
developmental
tism Res. 2012;5(3):160–79
One can also understand the scope of this problem by looking at the following list of challenges
that are faced by parents of an adult son or daughter with autism spectrum disorder. Because the
range of disability within ASD is so broad, we present a wide range of very typical challenges that
families face.
• Cessation of Educational Opportunities – Once a student leaves the school environment in which
they have supported learning opportunities, there are few if any places a student can go to advance
their learning. Most of these students could not avail themselves of post secondary learning
opportunities, as they require a significant amount of scaffolding to enable them to succeed. At
age 21 most typical students have a variety of skills and are reasonably literate. Even they need
ongoing training and many even most do some form of additional education or job training. This is
not possible for the majority of the young people with ASD.
• Unemployment – The rate of unemployment among all levels of persons on the spectrum is close to 100%. Some do manage to find limited employment opportunities through the services of centres such as Fredericton’s Jobs Unlimited. However, the majority of persons on the spectrum are not
successful. It is believed that people with Asperger’s (the most functional of persons on the
spectrum) have a 75-85 percent unemployment rate. Autism Speaks estimated that 85 percent of
adults with autism in the United States are currently unemployed or underemployed. Among young
adults between 21 and 26 years old, only 50 percent have ever had a paid job outside of their
households. This means that parents may have to support their son or daughter for most of their
lives. There are some government supports such as the disability tax credit and the disability
retirement savings plan but we know that not all persons with a diagnosed condition will qualify
for support and even if they did, the support is minimal in comparison to a living wage. The 40%
to 50% of persons with ASD who also have intellectual limitations are most likely to remain totally
unemployed although a few may find very limited opportunities through non profit community
agencies. The half of the ASD population with relatively higher intellectual skills will also have
very limited employment usually because of social challenges.
•
Regression of skills – All professionals who work with persons with ASD have seen the loss of
skills that results from a lack of stimulation that comes from learning in functional social
contexts. In fact, several years ago, UCLA Psychologist, Ivar Lovaas, did a study in which
individuals who had increased their IQ scores in a three-year treatment programme, lost almost all
of the 3 functional skills (e.g., language skills, self-help skills, and cognitive skills) they had learned after three more years of no educational programming. We experience these kinds of regression frequently when an individual passes from a relatively stimulating learning environment to living at the family home without a planned curriculum. Early intervention is the best way to provide long lasting learning but not all individuals will succeed sufficiently to be immune to regression of skills once formal training stops.
• Lack of respite Care – There are very few services available to provide respite to parents or
guardians of individuals on the spectrum. In addition, even fewer services exist (if any) that
have staff that re appropriately trained. This is a crucial service needed by almost all families
affected. Parents with adults on the spectrum can be in very desperate need for respite care. In
some cases, the individual with ASD will require care 24 hours a day and 7 days a week. Depending
on a family ‘s circumstances, this may mean that either a father or a mother will need to be at
home with the child at all times. In other circumstances, the needs may be different. An individual
may not require as intense care but may present with many challenging behaviours and the parents
may need short-term breaks.
• Lack of opportunity for recreation – Recreation has been shown to be an effective treatment for
many of the challenging behaviors we encounter with individuals on the spectrum. In addition,
there is research to show that individuals with developmental disabilities tend to be less fit in
general and tend to have more illnesses. In large measure this situation arises from lack of
suitable recreational and vocational services and far too much unstructured, idle, time.
• Restricted Social Lives – Individuals with a diagnosis are by definition less interested in
social interactions and more likely to seek solitary pursuits. The major disability in autism
spectrum disorder is a social disability. Left on their own this pattern of behaviour intensifies
and we know that increasing isolation from healthy social interactions can lead to major
challenges. With supports in employment and in other kinds of social interactions, persons with
ASD can enjoy and benefit from social contacts.
• Mental Illness – The research is clear. Individuals with ASD are more likely to be affected with
co-morbid forms of mental illness such as depression. The factors that contribute to the high
percentage of mental illness are social isolation, lack of social supports in meaningful
activities, lack of education, and lack of meaningful work and recreational activity.
• Behavioural Challenges – We need to point out that access to regular society (employment,
residential living, recreation, etc) requires a minimum of compliance and an absence of aggressive
behaviours. Many individuals with more severe forms of ASD have some level of behavioural
challenge. These behaviours are almost always caused by poor communication skills and inadvertent reinforcement of problem behaviours by caretakers who do not have sufficient training to handle these kinds of behaviours.
Summary of the Problem: It is clear from the description above that families with an adult child
can be faced with overwhelming challenges and stress related to providing the very best services
they can to their son or daughter.
Solutions: The needs of individuals and families and the scope of the problem described above canbe mitigated or overcome by our proposed centre.
Our proposed centre would not be a single building as such but rather a satellite network of homes, apartment-styled buildings and other facilities integrated as much as possible within residential neighborhoods. The design is explained in more detail below. Our approach will be innovative and uniquely designed to suit families in the New Brunswick situation. The key principles for this proposed village are that all programmes and services are as much as possible evidenced-based, that the centre be dynamic in the sense ofbeing flexible enough to meet diverse needs. It also needs to have a meaningful connection to the NB community and that includes accessibility of services and easy accessibility for families to maintain a connection to the clients in the centre (or centres).
Comparative Analysis: There are some existing facilities that serve adolescents and adults across
Canada, in the USA and in Europe. For example, in the Toronto region there is a group called
Kerry’s Place that offers evidenced based services for adults. New Jersey has some outstanding
private facilities and in particular the model developed at Princeton Child Development Centre is
called Mountain View. There are no services in New Brunswick that are remotely comparable to these services. Currently, when we have an adult with ASD that is unmanageable in a home or in existing special care homes, they are sent to a facility in Maine called Spurwink . The facility in Maine is a fine service but it costs the taxpayers thousands of dollars and is far away for the client’s family.
THE NEW BRUNSWICK “SATELLITE” MODEL: We have proposed a
"satellite" model that would provide residential and other adult services in several regions around
NB but also would have a home base located in Fredericton. In general, the best way to provide
the physical spaces and to find appropriate staff is to make use of existing facilities but offer
upgrading and training. There are a number of options available such as providing training and
other upgrades to selected group homes in the province. In addition, one can look at working with
selected developers to create some residential complexes for both typical individuals and persons
with special needs of various kinds.
Possibly, an autism centre can be created at UNB or in association with the Stan Cassidy Centre.
The details of the physical spaces need to be planned carefully but the guiding principal is to
provide dynamic services for all adults involved either as residents or as day users of the
facilities. As well, we want facilities that serve the diverse needs of the adult population.
SERVICES OFFERED BY THE NEW BRUNSWICK MODEL:
In a future draft of this proposal we will provide a detailed description of the kinds of services
that we envisage. These will include at a minimum residential services, sheltered work and
vocational services, ongoing training in life skills and personal care, treatment of behavior
problems, recreational skill development, respite care for families, training of families in skills
needed to maintain their son or daughter in a home setting, and social skill development. There are
clearly levels of support needed and the following is a list of some of the more obvious levels.
Over the course of their lives, individuals may move from level to another.
•
Independent living with assistance. Some adults with ASD are able to live
on their own. Others can live in their own home or apartment if they get help dealing with major
issues, such as managing personal finances, obtaining necessary health care, and interacting with
government or social service agencies. Family members, professional agencies, or other types of
providers can offer this assistance.
•
Living at home. Government funds are needed for families who choose to
have their adult child with ASD live at home. These programs include some form of pension,
disability tax credits, and support for extra services. However, we know that there is a point at
which family may no longer be able to provide support at home and other options need to be
available. Training for parents needs to be available.
•
Other home alternatives. Some families open their homes to provide
long-term care to adults with disabilities who are not related to them. A home setting such as this
type needs to provide some form of skill development such as teaching self-care and housekeeping
skills and arranging and getting involved in leisure activities.
The New Brunswick Autism Spectrum Village
•
Supervised group living. People with disabilities often live in group
homes or apartments staffed by professionals who help with basic needs. These needs often include
meal preparation, housekeeping, and personal care. People who are more independent may be able to
live in a home or apartment where the staff only visits a few times a week. Such residents
generally prepare their own meals, go to work, and conduct other daily activities on their own.
Once again however, training of staff is a key to success.
Long-term care facilities. This alternative must be available for those with ASD who need
intensive, one-on-one constant treatment and supervision. While this group is a minority, they
present the biggest challenge for their families who, at present, have no means to provide the
services required.
THE SATELLITE MODEL: There are good reasons to have the base for our satellite model located in Fredericton. There are already a number of sources of autism expertise in this location. For
example, a satellite model based in Fredericton would have would have a permanent connection to the University (Psychology, Education, Nursing) and the autism team at the Stan Cassidy Centre as well as other local health professionals. The base would also be the home for one of the most
important functions of our model and that is the training of staff and setting forward operational procedures and protocols. Since 2003, the University of New Brunswick (especially the College of Extended Learning) has been a key in the development of training for staff for preschool and school-aged children to date. It has also been involved in building capacity for Applied Behavior Analysis in other jurisdictions such as Saskatchewan and has developed new programs for undergraduates at UNB as well as an open access programme. Thus, we envisage a Fredericton-based centre that offers training and support and then a series of satellite facilities around the province that follow
service protocols developed by team at the main centre.
THE IMPORTANCE OF EVIDENCE-BASED SERVICES: The key to success
in providing excellent services to adults and adolescents is that the methods employed are grounded
in a body of research evidence. The philosophy of the proposed model is one that embraces growth
for all of its clients at all times. In no way are the centres to be construed as facilities for
warehousing clients – quite the opposite. The philosophy is to keep residents and other clients
engaged in meaningful social, work, and recreational activities. Keeping all clients learning and
actively involved in a range of activities is crucial. All services delivered need to be held up
to the rigorous standards of evidence.
THE IMPORTANCE OF ETHICALLY-BASED SERVICES: The second key
ingredient is that the services must have the highest level of ethics and as a
The New Brunswick Autism Spectrum Village result we may base our model's ethical treatment on
a modification of other relevant ethics codes such as the BACB Guidelines for Responsible Conduct
or the Canadian Psychologist Association. In the CPA code there are four basic tenets or major principles that are fairly typical of most codes. These include:
1) Respect for the Dignity of Persons
2) Responsible Caring
3) Integrity on Relationships
4) Responsibility to Society
Ethically–based services will not only meet with public approval, they will be more effective.
Clearly, one of the ethical principles is that we offer clients only those interventions that are
scientifically demonstrated to work. Thus, interventions are less likely to cause problems and
clients are more likely tothrive and develop more skills and adapt more to typical life.
When on August 2nd, Dr. Ivar Lovaas passed away, the field of autism treatment and behavior analysis suffered a significant loss. Dr. Lovaas began his career when the psychoanalytic theory of autism was presumed valid, despite a grievous lack of supporting research. Flouting that unsubstantiated conventional wisdom, Dr. Lovaas changed the course of autism treatment by initiating a long-term program of targeted research. That research led to his seminal 1987 study, demonstrating that some children with autism can make significant progress with early intensive behavioral intervention. This indispensable work paved the way for additional empirical demonstrations and single-case subject designed studies, all supporting the central premise that, with behavioral intervention, children with autism can overcome many of the debilitating effects of the disorder and learn skills previously considered unattainable.
