10 Years of NB Government Inaction On Adult Autism Care: Is It Possible Our Elected Leaders Just Don't Care?

It is increasingly difficult to be polite when discussing the lack of compassion demonstrated by NB governments towards New Brunswick's adult autism population. As the letter from Gary Mayes to the Telegraph Journal in 2005 demonstrates, after two years, at that time, of flat refusals to act, the refusal of our governments to address adult autism care in a systemic, conscientious fashion over the last decade is fixed in stone: 

Today New Brunswick still needs appropriate residential facilities to meet the individual needs of NB adults with autism, particularly those with severe symptoms including sensory challenges, obsessive routines and self injurious behaviors.  An adult autism care network with a center for permanent care and treatment for those most severely affected by autism disorders and expertise available for autism group home care around the province was proposed by UNB Professor Emeritus (Psychology), clinical psychologist and autism expert Paul McDonnell in 2010.  That proposal would also build on the success enjoyed by New Brunswick in early intervention and school services; areas which also need improvement but have been recognized as models worthy of emulation.

The McDonnell  proposal has received no serious consideration from NB's current government. That was made clear to me in a pre-Christmas 2012 chat at Kings Place with Ken Ross, Assistant Deputy Minister of Health.  When I raised autism issues for discussion with Mr. Ross and indicated ASNB's interest in adult autism care with him he diverted the discussion by asking questions about ASNB's organizational status even though ASNB is the most transparent disability advocacy group in NB, is totally conflict of interest free in that it receives no financial subsidy from the government, and operates, unlike another major community organization, at arms length from government.  While not being financially indebted to the government ASNB has consistently invited government and party leaders to ASNB meetings, an offer which has been recently been taken up by EECD Minister Jody Carr and NDP Party Leader Dominic Cardy.

Mr. Ross's attempt to change the conversation was exactly the same tack he took over a decade ago when ASNB was advocating for evidence based early intervention for New Brunswick's autistic children.  Ultimately the Department of Health transferred responsibility for providing early intervention to the Department of Family and Community Services as it was then called even though autism disorders are, and were, recognized as mental health disorders by the Diagnostic and Statistical Manual of Mental Health Disorders versions, IV and 5.  We did ultimately get back to adult care in our pre-Christmas discussion but there was no indication from Mr. Ross that he was even aware of the network proposal  suggested by Dr. McDonnell, a proposal which was consistent with positions taken over the past 10 years in meetings with and submissions to the Province of New Brunswick.  Ken Ross is not an elected official but he is a key autism adviser to New Brunswick ministers of health over more than a decade.   His lack of professed awareness of the ASNB or McDonnell positions is a strong indication that our elected officials have either ignored or outright rejected the proposed modern autism adult care network whether they were, or were not, acting on Mr. Ross's advice in doing so.

While NB has done much to help autistic children and students our governments  simply refuse to seriously address the needs of  autistic adults particularly those with severe challenges who must live out their adult lives in the psychiatric hospital in Campbellton.   It is difficult to avoid the conclusion that, when it comes to autistic adults in need of residential care and treatment, our governments, and/or some of their key advisers,  simply do not care.

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Autism's Invisible Adults in New Brunswick

Much progress has been made here in New Brunswick (Canada) to help autistic children over the past 6 years. Despite substantial advances for autistic children though almost nothing has been done to improve the lives of autistic adults here in New Brunswick.


Many problems and gaps in service delivery for autistic children still exist but we do have government funded early intervention for autistic children with service provided by staff trained at the UNB-CEL Autism Intervention Training Program. UNB-CEL has also begun providing autism specific training Teacher Aides and Resource Teachers. ABA is used in our schools, my son has received ABA based academic instruction for 4 1/2 years. Accommodations have been made in the form of differentiated learning environments. My son is instructed in a small room separate from the mainstream classroom at our request and visits the mainstream classroom, the gym, the pool, the kitchen and the grounds for various activities that exposed him to other children who regularly greet him during my visits.

Government, the media, the public, autism organizations and autism advocates, we all ignore too often the needs, the realities even the existence of autistic adults particularly the severely autistic.

Out of necessity in New Brunswick autistic youths and adults in need of extra care and attention have been sent out of the province, even out of the country, to receive treatment. Autistic adults have lived, and continue to live. in psychiatric hospitals, at least one has even lived on the ward of a general hospital in Saint John. An autistic youth was kept on the grounds of a youth correctional centre in Miramichi New Brunswick until an opening could be found for him at Spurwink a facility operated by our good neighbors in the state of Maine.

New Brunswick's autistic adults need an autism specific group home system. The current system involves placing autistic adults in need of assisted living in general group homes with no staff specifically trained to address the needs of autistic adults. One such home closed with only 24 hours notice.

The most pressing need for New Brunswick's most invisible autistic citizens, the severely autistic is for a multi-level residential facility which could also provide treatment or proximity to treatment. I have visited the Restigouche Regional Psychiatric Hospital in Campbellton New Brunswick where some of New Brunswick's severely autistic adults live. I was very impressed by the management of the facility. It is a necessary residence for some New Brunswick adult autistic persons because of the absence of a modern autism specific residential facility. But it is not the home I would want for my severely autistic son when I am dead or otherwise unable to care for him. Nor do I want if for other severely autistic adults as they age.

Autism is a spectrum of disorders. The spectrum aspect though is often ignored .. by all of us. The adult, aged autistic element is also ignored ... by all of us. Here in New Brunswick we need a multi-level autism residential facility, centrally located, with access to other autism specific resources available in Fredericton to provide expertise to assist in the operation of the facility.

Autistic adults, particularly the severely autistic, need such a facility in New Brunswick now. The truth is they needed it years ago. We can't change the past but we can make a future different from that past. If we start NOW.

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Autism's Invisible Adults In the New York Times

Congratulations to the New York Times for running a small guest opinion piece about the fate of autistic adults. The article, Growing Old With Autism, is written by Karl Taro Greenfeld, the brother of a low functioning autistic adult and the author of Boy Alone: A Brother’s Memoir. Mr Greenfeld makes the argument that the focus of autism awareness, fund raising and government response has been almost entirely on autistic children. The result has been a lack of resources in critical areas such as residential care and employment opportunities for autistic adults, particularly low functioning autistic adults.

Mr Greenfeld's brother is in his 40's and is low functioning. I am the father of a low functioning 13 year old who, like many parents in that situation, is struggling to prepare for my son's future. I am pleased to see the NYT devote some attention to this serious situation facing autistic adults, particularly low functioning autistic adults.

Mr. Greenfeld quite correctly points out the emphasis on autistic children in today's autism. awareness. Although he talks about his low functioning autistic brother's challenges he does not address directly another issue confounding the problem for low functioning children now becoming autistic adults - the media misrepresentation of autism disorders as being reflected in the realities of persons with high functioning autism spectrum disorders. By and large the media loves to dote on the high functioning autistic and Aspergian media trotters like Amanda Baggs, Michelle Dawson, Ari Ne'eman and Alex Plank. Few mainstream media features are built around the invisible autistics - the low functioning autistic adults living in institutional care or otherwise living very restricted lives dependant on the care of others.

This father of a teen age boy/young man with Autistic Disorder and profound developmental "delays" says thank you to Mr. Greenfeld and the New York Times for this small step towards reminding the world about the invisible autistics, the low functioning autistic adults, the ones who do not attend university, pose for fashionable photo shots in high powered magazines or run from camera to camera shouting "we don't want to be cured".

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Autism Awareness and Action Needed for Autistic Adults

Linda H. Davis in Still Overlooking Autistic Adults in Saturday's Washington Post reminds us of our neglect of autistic adults and the bill that will come due more and more with each passing day. She describes very colorfully the realities facing the United States and by extension Canada where we too have neglected to seriously address adult autism issues. She describes a US population of autistic adults larger than the city of Minneapolis. I recommend that everyone with an interest in autism issues read Ms. Davis' commentary and I commend her and the Washington Post for raising this issue.

How will this Autism Metropolis be funded? Who will provide the necessary care and attention that many autistic adults, including my son Conor, will need? Ms Davis describes the difficulty in drawing attention to the plight of autistic adults as compared to autistic children. She suggests that we all have a tendency to avoid contemplating the cute autistic child as a full grown adult and imagining the future. For Ms Davis, growing frailer with an incurable cancer, and the mother of a 22 year old son, the future is now, right now.

Ms Davis being the mother of an autistic adult male does not describe the challenges of caring for an autistic adult in the abstract, feel good nonsense of the joy of autism ideology. She describes some harsh realities:

A well-behaved, relatively high-functioning person such as my son could manage in an environment that has a ratio of three clients per staff member. But many autistic people require a one-to-one ratio. This is a serious hurdle, not least because of the high turnover rate among those who provide direct care, which stems in part from their low wages. Not everyone is temperamentally suited to this work. People with autism present myriad challenges: They can sometimes be violent, sometimes are self-abusive, suffer psychological meltdowns, or behave in many socially unacceptable ways, to say the least. Women, traditionally cast in the caregiver role, are at risk of greater physical harm when caring for autistic adults than for children. At expected rates, we will need to find an additional million caregivers, people who must have the right personal qualities to work with autistic individuals but who are willing and able to work for low wages. This is no small challenge. We not only must train people but also show that we value this work by paying them better.

Linda H. Davis calls for the discussion to begin now about how to care for autistic adults and she is right. She calls for such a discussion to take place in the United States. But we are also in dire need here in New Brunswick, and across Canada, of engaging in the same discussion. Such discussion is in fact long overdue.

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Lack of Adult Autism Facilities Separates Families In Scotland

Our autism heartache tells the story of the Browe family in Scotland that must travel 600 miles to visit their adult autistic son Darren in England because Scotland lacks specialist care facilities for autistic adults. The story describes the severity of the son's condition and the difficulties faced by traveling such distances to visit their son. Sometimes after traveling 600 miles they don't get to see him because he is having a bad day. The evening times report that such families are not unique in Scotland: "A UK autism charity says more than half the adults with autism in Scotland do not receive enough support to meet their needs and face having to move away like Darren."

The situation in Scotland is not unique to that country either. Here in New Brunswick, Canada, we are still exporting autistic adults to the United States because we do not have dedicated residential facilities for autistic adults and nothing suitable for severely autistic adults. We have placed an autistic youth on the grounds of a corrections facility simply because we have no facilities. An autistic adult has resided on the ward of a hospital in Saint John. Our province takes no action to address this need regardless which party is in power.

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Autistic Adults Relationships and Sexuality Study

Do You Have High-Functioning

Autism, Asperger’s Disorder, or PDD-NOS?

Are you between the ages of 21-75?

Are your cognitive abilities within the low average to above average range?

Would you be interested in learning more about yourself and how you

feel about relationships and sexuality?

If you answered yes to the above questions, you are eligible to participate in a

research study being conducted by researchers at the

North-Shore-LIJ Center for Autism (New York, USA)

and the

University of New Brunswick (Fredericton, Canada).

The purpose of this study is to better understand sexuality and relationships of adults with high-functioning autism spectrum disorders (ASDs). The information collected from the study may increase knowledge of how best to help teens and adults with ASDs experience healthy sexual development.

Participation in this study involves completion of a set of online questionnaires at www.unbstudy.com that will take between 45 minutes and 1¼ hours to complete.

For more information about this project, please contact

Shana Nichols, Ph.D., Psychologist at 516-802-8600

or

Sandra Byers, Ph.D., Psychologist at 506-458-7697

autism

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Ultimate Autism Reality - Who Will Care For My Autistic Son When I Am Dead?

The great and unshakable certainty in each person's life is that it ends, that at some point each of us dies. Most of us put that undeniable reality out of our minds as we go about our daily lives. We use euphemisms to describe the reality of death. We refer to the "time of our passing" or "when I am gone". In that way we are able to enjoy our time, the precious, fleeting moments that we have allotted to us. But for some of us it is not that easy to forget what waits for us. Some of us have a child that we know will not be able to live independently, to care for himself or herself as adults. That is the case for many parents of severely autistic children. Like many I wonder who will care for my autistic son when I am dead.

In New Brunswick, Canada at this time I do not have an answer to that question that haunts me with increasing frequency. The realities of life for autistic adults in need of residential care in New Brunswick are not pretty. We do have a group home system but the homes in question lack professional expertise and offer little in the way of life style opportunities for enjoyment, recreation and exercise. They are not generally equipped to deal with the more severely challenged autistic persons.

We have no institutional level facility designed to provide residential care and treatment of autistic adults in New Brunswick. This has become brutally clear in the past few years as we literally exported our autistic adults to the United States and other Canadian provinces. We are failing our autistic adults. In New Brunswick we do not have the institutional level facilities necessary to provide residential care and treatment, to provide expertise, security and life enjoyment to severely autistic adults.

My son, now 12 years old, with Autism Disorder and profound developmental delays, is well on his way to becoming one of those adults with autism for whom the Province of New Brunswick offers no suitable residential care. And I am now, as I type these words, one of those parents who can not answer the question - who will care for my son when I am dead?

autism

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Autism Crisis In Scotland - Invisible Autistic Adults

In Scotland Lacks Autism Services I commented on an article on healthcarerepublic on July 6, 2007 and the lack of services for people with autism in Scotland. That article, Call to find autism early in Scotland, focused on guidelines published by the Scottish Intercollegiate Guidelines Network (SIGN) calling on doctors to look for signs of autism in children and adolescents, including problems with social interaction and play, speech and behaviours. The article also expressed the doubt of many professionals in Scotland that early diagnosis would make much difference because of the lack of autism services available in Scotland.

In Revealed: ‘invisible’ adults living with autism, the Sunday Herald today reports, on an impending report by the National Autistic Society, the lack of services for autistic adults in Scotland, their dependency on family members for support and the isolation in which many spend their lives:

"Issues in the report include limited access to diagnosis, with 56% of those surveyed saying they found it hard to get their condition recognised. One adult said: "The GP did nothing. She didn't see any point in diagnosis for an adult."

But even after diagnosis many say they do not get the support they need. One participant in the survey commented: "I have had little or no support ever - my mother has done everything."

...

Bill Welsh, president of the Edinburgh-based Autism Treatment Trust, said the plight of many adults with autism had been "swept under the carpet", yet one child in 100 in the UK was diagnosed with the condition and the cost to society for each autistic child was estimated at £4 million. He added: "A major social, health and financial problem is upon us and urgent action is required."

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Autistic Adults Lack Vital Services

When people think of adults with autism they tend to think of Dustin Hoffman's role in "Rain Man", or real people like Temple Grandin Ph. D. one of the most accomplished autistic adults in the world. Others might think of anti-ABA crusader Michelle Dawson who has appeared before the Supreme Court of Canada and the Canadian Standing Senate Committee on Social Affairs, Science and Technology as part of her ongoing campaign to prevent Canadian governments from funding Applied Behavior Analysis interventions for autistic children. Here in New Brunswick many people would think of Jason Oldford who has long been involved in efforts to help autistic children and adults in New Brunswick. Mr Oldford also appeared before the Canadian Senate Committee and offered a positive voice in support of efforts to assist autistic children with ABA intervention.

When thinking of autistic adults most people will not think of the 50 year old autistic woman who can not speak or convey emotions or pain and who was repeatedly battered and beaten by employees at the PLUS Group Home Inc. residential care facility in Long Island. This sad case is not an isolated event. In Reopen the institutions? Advocates Reverse Stand as "Community" Tragedy Unfolds (1997) Bernard Rimland exposed the horrors that resulted from closing down institutions that provided residential care and treatment for autistic adults and other persons with developmental and mental impairments. Rimland cited the 1993 report by US Congressman Ron Wyden which noted that:

"the private sector residential facilities for the mentally retarded have become an $11 billion-a-year business.. Millions of Americans with these life-long handicaps are at risk for poor quality care, questionable and even criminal management practices by service providers, and lackluster monitoring by public health and welfare agencies."

Rimland cited a disturbing pattern of abuse, neglect, and mismanagement and some terrifying statistics:

"A disturbing pattern of abuse, neglect, and fiscal mismanagement has emerged:

• "Employees at small community based facilities are often under-trained, poorly paid, and inadequately screened. As one New York State official put it: 'some consumers leave institutional programs where staff have received 100 hours of training, and move to homes where staff do not even know first aid.'

• "Former employees of one facility reported that prescribed medications for residents are routinely discarded."

• Dr. Cindy Ochs, of Livonia, Michigan, who cares for mentally retarded residents at about forty metro Detroit homes, stated, "They're hiring people off the street for five or six dollars an hour to care for patients who have complicated seizure disorders, feeding tubes, all kinds of problems."

Under these conditions, it should surprise no one that death rates have risen to horrifying proportions. As we recently reported (ARRI 10/4, 1996), a study by David Strauss and Theodore Kastner, based on 18,000 adults who were "clients" of the Department of Developmental Services in California from 1980 to 1992, found the death rate to be 72% higher in group homes than in asylums. A more recent study of nearly 1,900 California patients transferred to group homes from asylums in 1993-1994 showed an 82% higher death rate in group homes. In both studies, the "institution" and "community" patients had been carefully matched on all known risk factors.

Death can come quickly to those removed from institutions. Ten patients died after being discharged from the Porterville Developmental Center into group homes. "Most were middle-age and had lived much of their lives in state centers," the San Francisco Chronicle reported on February 25, 1997. "Their average life span after leaving Porterville: just 62 days."

As Strauss points out, "deaths are but the tip of the iceberg. Where there's an excessive number of deaths, there's an excess of other types of medical problems. for every death, there are many emergency hospitalizations." And, obviously, for every emergency hospitalization, there are a multitude of untold and unrecorded tales of hunger, neglect, and abuse of every imaginable kind. The situation is so clearly monstrous that even the most vocal advocates of the "close the institutions" school of thought (actually non-thought) have been forced to change their tune.

In Australia both government and opposition parties have recently announced funding packages to provide early intervention for autistic children, a critically important service. Autism advocates and service providers though remain concerned that the needs of adolescent and adult autistic persons, most of whom would not have benefited from receipt of ABA intervention, remain neglected. Ken Baker, chief executive of National Disability Services, said the Government's plans were a strong foundation that the:

"challenge now is to ensure that services for people with autism, where required, are also readily available later in life," Mr Baker said.

In Canada, in the current Ontario election campaign, debate has taken place around the provision of Intensive Behavior Intervention services to school age children and the removal of waiting lists for autistic children to receive services. There has been very little mention, if any, of the needs of autistic adults; of the residential care and treatments needs of our most vulnerable autistic adults.

Here, in New Brunswick there is a lack of information available concerning actual conditions facing autistic youths and adults living in group homes. My own experience as an autism advocate and discussion with other advocates indicates that staff in New Brunswick group homes lack autism specific training. As a province, as a society, we have failed our more severely autistic youths and adults by failing to provide appropriate residential care and treatment. In New Brunswick our more severely autistic youths and adults have been sent out of province to other provinces and in some cases to the United States to receive treatment. In one instance an autistic youth who had been charged with no criminal offence was sent to reside on the grounds of a youth correctional facility because that was the only accommodation available for him while he awaited treatment at the Spurwink facility in Maine.

We have to do more for our autistic youths and adults. We have to ensure that residential accommodations suitable for autistic people are available for them, accommodations in which they can maintain ties with their families and friends in safe, hygienic settings. We also need institutional care facilities for the most severely autistic; facilities at which they can receive proper care and treatment.

It is time we stopped pretending that privately run group homes operated by poorly, or untrained, staff are a fix all solution to the very serious residential and treatment needs of autistic youths and adults. It is time we started talking about autistic adults and their needs.

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Autism Society New Brunswick AGM - October 13

Annual General Meeting
Saturday October 13, 1-4 pm
Crowne Plaza, Fredericton





The theme of the annual general meeting of the Autism Society New Brunswick this year is Autistic Youth and Adult Residential Care and Treatment in NB. I am privileged to be the featured speaker and will address those present on the current state of residential care and treatment services for autism in New Brunswick, discussions with the Province of New Brunswick in relation to these critically important matters.

These discussions could have a significant influence on the future course of youth and adult residential care and treatment in New Brunswick which, as it now stands, is in serious need of upgrading. We all hope that our children outlive us and have long and happy lives after we are gone. Now is the time to take steps to ensure a positive future for your autistic children in New Brunswick. YOU are a stakeholder in the most important sense of that expression. ASNB recognizes that and urges everyone in New Brunswick with an autistic loved one, and autistic persons themselves, to attend this meeting.

Please contact ASNB at autism_nb@yahoo.com to confirm your attention to attend.
You may also send me an email at either of these two email addresses:
dohertylaw@rogers.com or AutismRealityNB@gmail.com

I hope to see you at the Crowne Plaza in Fredericton on October 13.

Harold L Doherty

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Take My Son - A Family's Painful Autism Reality

"Take my son".

- Teresa Abernathy

These are the words that families with severely autistic children know they may someday have to utter. They are the words that I know I will probably someday have to speak, as the father of a severely autistic 11 year old boy, although I do not know the context or the circumstances that will give rise to them. In A Painful Choice To Save A Family the Arizona Republic tells the story of Teresa Abernathy and her family including her husband her severely autistic son Colin and his siblings brother Connor and sister Erin.

The Abernathy's did all they could to help their son overcome his severe autism but finally the disruption in the lives of family members and the violence that Colin inflicted on his mother, the bruises and bite marks, were too much. Colin's mother made the gut wrenching decision to give up her son to the care of the state. As the article indicates it was the right decision for all, including Colin, who benefited from the care and attention he was able to receive. This is a story that all who truly want to understand the realities of severe autism should read. The Arizona Republic, and reporter John Faherty, deserve full credit for telling a story that will not be told by Dr. Gupta and CNN or featured in a Hollywood movie. The Abernathy family - Teresa, Jim, Connor and Erin, all deserve credit for their courage in telling their story, and Colin's story, to the world.

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