Sudden severe, migraine pain can accompany Autism with Intellectual Disability and Seizures.
Members of the New Brunswick Legislature and NBers with Interests in Autism Disorder
NB's Adult Severe Autism Health Crisis & the Need for An Autism Village Network Treatment and Care Model
In 2008 I was a member of the Autism Society NB when we drafted a submission to the NB government on youth and adult residential care and treatment. Included in that submission was a statement that NB needed an adult autism residential care and treatment network including a centre for those most severely affected by autism and related disorders.
In 2015 I helped organize a meeting with then Minister Cathy Rogers to discuss a detailed model of an Autism Village Network Proposal drafted by Professor Emeritus (Psychology) Paul McDonnell who also attended the meeting with me and parent Cynthia Bartlett. The meeting, as I perceived it was very positive, but nothing came of it, not even a substantive meaningful response.
In August 2018 members of the Autism Advocacy New Brunswick group attended in Fredericton on a warm October afternoon and voted overwhelmingly in support of the Autism Village Network - Satellite Model drafted by Paul McDonnnell Professor Emeritus (Psychology).
In April 2019 autism parent advocate Cynthia Bartle & I met with then social development minister Dorothy Shephard 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. A copy of the proposal is included herewith.
Studies and reports such as the Autistica UK Personal Tragedies, Public Crisis have documented the reality of severely 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. Epileptic seizures are the primary trigger for the early death of the 40-50% of persons on the autism spectrum who also suffer from intellectual disability.
Despite the severity of the health crisis facing nearly half of the autistic population who also suffer from epilepsy and seizures nothing has been done. In fact I was informed by several MLAs that any response to our concerns about adult autism health care would probably have to wait the presentation of the "Hutch" Report an initiative of the Autism Connections Fredericton executive director Rick Hutchins who has no family experienence caring for adults with atuism nor any professional or academic education with autism disorders. He appears to have friends in government from his lobbying career and he appears to be a close friend also of Paul McDonnell Ph.D. While Professor McDonnell wrote the 2015 Report and attended our meeting with then Minister Rogers he did not speak out as an advocate as he did in 2015 and earlier in 2010. The allegedly provincial focus report on adult autism needs does nothing to explain the serious challenges facing adults with severe autism, intellectual disability, and seizures including migraine There is no attempt, in the Hutch Report to address the severely reduced life expectancy of those who suffer from ASD, Intellectual Disability and Epilepsy. The latter also includes sudden onset migraine attacks which can be mistaken for bad behaviour. Time that many parents do not possess in abundance has passed until the Hutch Report was pushed onward. The only positive aspect of the Hutch Report was for the benefit of the Autism Connections Fredericton Centre with a recommendation for ... increased funding for ACF.
Unlike Mr Hutchins I have held my son in my arms as he has fallen into tonic clonic seizures and seen him fall to the floor at the cash at the Superstore on Main St in Fredericton New Brunswick where the staff, fortunately were very well trained in assisting me with my son's seizure at that time. I have seen him suffer abruptly in severe migraine pain. I have included pictures I was taking of him on the swings happy as could be seen before and during rapid onset migraine pain. My camera was on an athletic setting which captured the movements very quickly as it would for a sporting event.
I ask you to review carefully the 2015 proposal for the NB Autism Spectrum Village - Satellite Model, drafted by NB autism expert Paul McDonnell with input from parent autism advocates who fought for the early autism intervention program, the autism trained aides and resource teachers in our schools and the reversal of the decision to close the Stan Cassidy Autism team. The Autism Society New Brunswick drafted a similar model, albeit less expert and professional than that of Professor Emeritus (Psychology) Paul McDonnell after conducting a survey of NB families in 2008.
The Ombud has produced a report with which you are all familiar which speaks to the very unhealthy conditions at the Restigouche. A centrally located centre for severe autism care and education of those who provide care in special care homes around NB to autistic adults is essential and without such a network it is my opinion as a long time autism advocate, a father of an adult son with severe autism and a practicing lawyer that the harm that has endured will continue. As I grow older I do not see a system in place to provide care for my adult son with autism, intellectual disability and epilepsy a common and very serious life threatening combination on the autism spectrum.
In my humble opinion, both personal and legal, I see neglect on a scale that violate the United Nations Convention on the Rights of Persons with Disabilities. My 24 year old adult son lives with limited communication skills, migraine pain and epileptic seizures. I have to keep on fighting until I can't. I understand you all have many other issues especially now in the COVID era.
The Hutch Report added nothing of value for those with severe autism, intellectual disability, epilepsy and a 30 year reduced life expectancy.
I hope that you end the delay and start working on the proposal as written by Paul McDonnell in 2015.
Respectfully,,
Harold L Doherty, BA, LLB
Conor's Dad
Queen Elizabeth II Diamond Jubilee Medal Recipient - Autism Advocacy
The New Brunswick Autism Spectrum Village - The Satellite Model
It Takes a Village to Support Adults with Autism Spectrum Disorder
NEW BRUNSWICK SATELLITE MODEL FOR
ASD SERVICES FOR ADULTS
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 sp ctrum 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 can be 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 of being 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.
