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When Innocent Children are Victims of the very System Promoted as Protection – VM

March 18, 2019

I am reluctant to engage in this dialogue due to the fact that in a day and age where awareness is readily available to the public in mainstream media, some individuals choose to turn a blind eye to its tragic reality. Skimming comments, I see responses by naysayers accusing you of being angry and out-of-touch with accurate information. Frankly, everyone ought to be outraged and heart-broken over the toll of lost young lives!

The Public has a right to attend Fatality Inquiries for Children. I encourage people to do so as it becomes blatantly obvious that repeated scenarios involving negligence within the System are transpiring. Judges issue Reports with recommendations which mirror that of colleagues. However, implementation does not follow; nor consequences for not heeding recommendations; thus, little incentive for behaviours to change.

I’ll refrain from getting in-depth into the politics of why families may require services, other than to acknowledge targeting is widespread towards race, age, gender, disability, health, false allegations, and whether the parent themselves grew up under the Child Welfare System. (Regardless whether a child enters the System due to a horrendous or pristine family background, not a single one deserves to be harmed.)

The Alberta Association for Community Living provided statistics based on government records indicating 70% of children in the system have a disability. Instead of resources being distributed directly to families, custody is severed in favour of out-of-home placement. 

http://inclusionalberta.org/clientuploads/documents/Connections%20Spring08.pdf

I dispute the notion that most children who die in care are the result of “natural causes.” Example: A child in care with epilepsy suffered a heart-attack and succumbed. Background: In reality, the child was not presented to medical professionals for years while in care of the Department. The child was referred for investigation of epilepsy, yet the foster placement did not pursue medical attention. The child’s caseworker did not follow-up to ensure treatment had occurred; nor visit the child for periods over a year. And yet, that child’s death is labelled, “natural”. 

Suicides also are frequently excluded from statistical enumeration. Youth whose family have entrusted specialists to assist their vulnerable child with services see their loved one in treatment, yet floundering because monitoring of worsening depression and supports are sporadic or non-existent. When  families attempt to alert authorities to concerns, are flagged instead as, “difficult” or ignored altogether. Despite urgent pleas from family members advocating, a youth continued to be terrorized by peers in a group-home. She displayed graphic images about death on social-media before ending her life by hanging.

These are but 2 examples of a widespread phenomenon taking place across Canada.

“Between 1999 – 2013, 741 Alberta children died while in care or while receiving child welfare services.” Of the toll, 56 fatalities were publicly reported; the remaining 685 victims were not divulged until investigative journalists uncovered the truth:

https://www.google.ca/amp/s/edmontonjournal.com/news/politics/paula-simons-will-our-political-leaders-allow-serenitys-death-to-be-in-vain/amp

Fatal Care: an investigation into the deaths of 741 children in Government care:

 

http://www.edmontonjournal.com/news/children-in-care/index.html

 

The Province of British Columbia cites 123 deaths of children in care 2008 – 2018.  At first glance, one might surmise BC’s Child Welfare System functions better than Alberta’s, but when you add an additional 375 children who died for reasons other than natural causes in that same period while “receiving services”, the result is more menacing.

https://www2.gov.bc.ca/gov/content/family-social-supports/data-monitoring-quality-assurance/reporting-monitoring/statistics

Saskatchewan is less than transparent regarding the number of children in care who have died. The most recent information indicates more than 200 children in care have died between 2004-2013. It is important to note, that figures released by the Province are incomplete as they do not include Indigenous children living on a reserve.

https://www.cbc.ca/news/canada/saskatchewan/hundreds-of-children-with-social-services-ties-died-in-sask-1.2501435

 

The Province of Ontario issues death statistics in bulky annual reports from the Office of the Chief Coroner Paediatric Death Review and Deaths Under Five Committees. The most recent report published in December 2018 indicates 121 children listed as CAS cases died in 2016.  However, the figures do not represent the total number of deaths of children in care of the Children’s Aid Societies. There were 121 deaths referred to the Paediatric Death Review Committee, but the figures exclude the total amount of child fatalities.

https://www.provincialadvocate.on.ca/publications/partnership-reports/2017-and-2018-pdrc-du5c-report-final.pdf

 

There is a disturbing veil of secrecy in which Coroners and Leaders are stepping forward to reveal startling details: 

“Dr. Anny Sauvageau has raised concerns interference by provincial government representatives may affect the public’s trust in the integrity of the death-investigation system, specifically in relation to deaths of children in provincial care.”

https://www.google.ca/amp/s/www.cbc.ca/amp/1.2769882

 

“Grand Chief ‘horrified’ Alberta quietly allows organ harvesting from children who die in provincial care.”

https://aptnnews.ca/2015/05/05/grand-chief-horrified-alberta-quietly-allows-organ-harvesting-children-die-provincial-care/

 

This is but a glimpse into the Child Welfare System across Canada. *To be clear, I do not dispute a need for intervention nor belittle the efforts of System workers who genuinely care. However, uncovering and acknowledging the poor with the positive must also occur if we hope to offer our youth better outcomes. Minimizing the damage by evading reality to protect the System – as opposed to supporting children and families – is as dangerous and negligent as those who inflict harm through physical means.

Sincerely,

Velvet Martin,

Founder of Samantha’s Law

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More support needed for unpaid caregivers in Canada

March 7, 2019

More support needed for unpaid caregivers in Canada | CBC Radio 

https://www.cbc.ca/radio/whitecoat/more-support-needed-for-unpaid-caregivers-in-canada-1.5041440

More support needed for unpaid caregivers in Canada

 

If paid, caregiving provided by family members and friends would add up to more than $24 billion

Dr. Brian Goldman · CBC News · Posted: Mar 04, 2019 12:49 PM ET | Last Updated: March 4

Stephane Alexis helps care for his brother Torence, left, who has cerebral palsy. More than one in four Canadians provides informal, unpaid caregiving to family members or friends, according to Statistics Canada. (Justin Tang/Canadian Press)

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Statistics Canada says more than one in four Canadians puts in regular hours providing care for family members and friends with chronic illnesses or disabilities. All that unpaid labour comes with a high emotional cost, according to an  editorial published Monday in the Canadian Medical Association Journal (CMAJ).

The editorial, by Dr. Nathan Stall, an attending physician at Sinai Health System in Toronto and an associate editor of CMAJ, says more must be done to support the millions of Canadians who provide informal or unpaid care to loved ones and friends. The majority of people needing care are seniors. 

It calls on the federal and provincial governments to provide more financial support to informal caregivers. It also says the health-care system needs to do a better job teaching them how to provide care, given that “despite little to no training, they are expected to provide medical and nursing care in the home, navigate complicated health and long-term care systems, and serve as substitute decision makers.”

Crucial for health system, many caregivers are struggling financially and emotionally, report says

And, the editorial says, emotional support and respite care are essential ways to help informal caregivers take better care of themselves — because they often put their own health concerns aside while looking after their loved ones.  

The amount of work performed by informal caregivers is astonishing. On average, they devote 19 hours a week to caregiving duties, the CMAJ editorial says, with one in 10 informal caregivers putting in more than 30 hours a week. 

That work is allowing many seniors to stay in their homes. Informal caregivers provide an estimated 75 per cent of services to seniors at their place of residence and a 2012 report by the Health Council of Canada said that 93 per cent of seniors live at home. 

Although family members and friends provide informal caregiving for a variety of chronic illnesses and disabilities, the majority of care needs are aging-related, according to a CMAJ editorial published Monday. (Ed Hunter/CBC)

If more and better home care was available, this is work that would be done by personal support workers (PSWs) at a hard dollar cost. If society paid PSWs to do that work, it would cost between $24 billion and $31 billion per year. 

All of that work has a huge impact on informal caregivers. There’s the economic impact: many caregivers reduce their hours at their paid jobs, miss work, or leave the workforce so they can care for their loved ones. I’ve personally met informal caregivers who have passed up new jobs and promotions to look after ailing parents.

Then there’s the impact on the physical and mental health of informal caregivers. The work they’re doing is stressful. If they also have jobs outside the home, they’re working upwards of 60 to 70 hours a week between their paid employment and unpaid caregiving.  

 A report by the Canadian Institute for Health Information found that 26 per cent of informal caregivers are in distress. If the loved one has dementia, the figure rises to 45 per cent. Informal caregivers are at increased risk of depression. They’re often in conflict with extended family members and stop going out with friends.

Almost half of caregivers of loved ones with dementia experience distress, report says

WHITE COAT BLACK ARTHow to reach the person inside the dementia

Often, they don’t eat well or exercise properly. They may go months without a good night’s sleep. They neglect their health. They put off seeing the doctor even if they are experiencing serious symptoms like intestinal bleeding and chest pain. And, they are more likely to die prematurely.

I’ve seen this situation up close. My late mother was diagnosed with dementia at the age of 70. For the next 15 years, my late father was her full-time, live-in caregiver. In the beginning, he organized my mother’s life and made sure she kept up her exercises. Eventually, he became her personal attendant. He did all of that while ignoring his own heart disease until it was inoperable.

Older Canadians don’t have a monopoly on these challenges. Last season on White Coat, Black Art, our town hall episode Crisis of care featured the stories of  many parents who put jobs on hold to care at home for fragile children with extraordinary needs. The current system is failing Canadians of all ages and all walks of life.

What needs to be done? Boosting home care would help, but by itself isn’t sufficient. It’s inevitable that some care must be provided by informal caregivers. Hospitals like Sinai Health System in Toronto — where I work in the ER — assess and train informal caregivers to do the job better. They teach them to solve problems on the fly. The hospital also provides psychotherapy for caregivers in distress and respite care so they can take a break.

Studies show these programs relieve caregiver stress and help them feel more competent as caregivers.

The CMAJ editorial says the provinces should follow the example set by Manitoba and Quebec and provide informal caregivers with refundable tax credits. They could also follow Nova Scotia’s lead and provide low-income caregivers with a monthly benefit.

Above all, informal caregivers should be respected and thanked for the tireless work they do. They are a national treasure and deserve to be treated as such.

ABOUT THE AUTHOR

Dr. Brian Goldman

Dr. Brian Goldman is a veteran ER physician and an award-winning medical reporter. As host of CBC Radio’s White Coat, Black Art, he uses his proven knack for making sense of medical bafflegab to show listeners what really goes on at hospitals and clinics. He is the author of The Night Shift and The Power of Kindness: Why Empathy is Essential in Everyday Life.

Our Story written 7 years ago #SamanthaMartin

February 4, 2019

Written seven years ago:

February 4, 2012

Most know our story because many have lived it alongside us. However, I am often asked to recall the details to those who are unfamiliar so, here, is Samantha’s story in brief: 

Our daughter Samantha was born in 1993 with a rare genetic condition called tetrasomy 18p syndrome, autism and absence seizures. Samantha suffered sudden cardiac arrest one day and died unexpectly. NO ONE with the syndrome, but our little girl has succumbed due to the disorder! 

At the time of our daughter’s birth, dire prognosis for development, led the University Genetics’ Clinic to benignly refer social services’ to help us locate supports. However, that was not what transpired: Instead, we were advised that the sole way to achieve necessary government funding for medial therapies and services would be for Samantha to live in an out of home medical placement. Natural families, the Ministry Represented stated, could not receive the level of needed support such as that provided to foster care. 

We were informed that if we wished to offer our child a chance at life, this was the “kindest thing to do”. Reeling from the dignosis that our daughter would likely not walk, talk, see, nor comprehend that we were her family (the hated phrase utilized to describe lack of development was “imbecile”), we were terrified and naively succumbed to “expert opinion”. 

In a nutshell, optimum care was not afforded our daughter. In fact, grave issues surfaced and although we repeatedly brought concerns forward to our caseworker, these were belittled and ignored. Years went by as we tried to learn our rights and responsibilities… No one would tell us the truth: The foster mother and caseworker indicated that there was a guardianship split from which the Ministry had the final say. We, our family, were legal guardians of our child; yet until our daughter lay in hospital dying this information was not revealed to us. 

You see, we had entered into an “Agreement” with Ministry all those years ago – which unlike an “Order”… our arrangement was strictly to achieve medical supports – as advised – and at no time ever was our case an intervention issue. Yet, we were treated as such… distanced from our child, siblings unable to see their sister and all parental rights erroneously transferred to the placement. The caseworker informed that she had difficulty locating placements for children less disabled than Samantha and advised us not to make waves. We later learned that we were “1 of 4 families” in the Province of Alberta who existed under the archaic Agreement. 

Following the death of our daughter, I began to seek records that I then knew we were entitled to obtain. I learned the most heart-breaking revelations. For instance, a Principal and Rehabiliation Aide at Samantha’s school witnessed the foster mother take hold of my daughter and shake her. The reason? Samantha had been sick, vomiting all day and a decision was made by authorities that she could not safely return to the placement on a school bus; that Samantha would need to be retrieved. The foster mother, they wrote, was so angry, denying illness, that she took Samantha and yelled, “STOP IT” as she shook her when she began to vomit. 

I discovered from past medical records even MORE sinister health concerns had emerged repeatedly… Samantha sustained 7 broken limbs, stitches, and various other injuries in the foster placement. Our little girl was first recognized having absence seizures by an RN on her 3rd birthday. 

Throughout the years, other specialists witnessed similar signs and recommended follow-up assessment for treatment to the foster mother – which the caseworker had knowledge of – yet no medical intervention was sought, nor were we the family and legal guardians ever informed. I had, at one point, even asked outright whether there was a possibility of seizures because statistical research indicated that 25% of individuals with the syndrome have a disorder. I requested that the information be shared with the pediatrician, but he was never told. I learned as well, that the caseworker, too, knew about the seizures and naively trusted that the foster placement would secure medical intervention and never followed up to ensure it had occurred. 

Twelve years after Samantha’s birth, at last, the Office of the Child Advocate in Alberta became involved. I credit Samantha’s escape from foster-care to this agency AND the fact that her file was removed from the Office which had been over-seeing decisions for nearly her entire life. Samantha came home and immediately flourished! She gained 10 pounds; which was 20% of her body mass having been only 50 pounds throughout the ages of 11- 13 in foster care. 

Within the summer months, I taught Samantha to toilet and she gained continence during daytime hours; so proud of herself having experienced wearing “big girl” panties for the first time in her life. 

Language also began to emerge… Samantha started learning words and with her brothers’ efforts each day, began to accurately say their names! Thirteen years of being non-verbal and suddenly Samantha was able to say words and very close approximations of phrases. “Good-morning!” She would greet her bus driver happily. The strides in development in all areas was extraordinary. Social-worker remarked that Samantha’s development had obviously been severely repressed. Teachers referred to Samantha as “A butterfly who emerged from her cocoon.”

Now watching Samantha on a daily basis, we, ourselves, suspected the presence of seizure activity – confirmed by educators – so pursued testing with neurology (EEG.) Our pediatrician even witnessed Samantha having an episode in the office! A second evaluation was to take place and treatment was to begin, however, within days of that office visit, our daughter suddenly took ill at school. A second EEG was scheduled for the very next day; I spoke with the hospital’s nurse and she advised we continue to monitor Samantha and the anesthesiologist would decide whether or not to proceed with sedation. 

In the early evening, our daughter did not respond to her name so we rushed to emergency where she was determined to be in cardiac arrest at the hospital. In hindsight, I don’t believe Samantha was merely resting, but was actually exhausted from having repeated seizures during sleep which caused the heart to stop functioning. 

Samantha passed on December 3rd 2006. Amendment to the Family Supports for Children with Disabilities (FSCD) legislation was effected retroactive to December 2006; which I was informed by FSCD, was because of Samantha.

The life and circumstances surrounding Samantha Lauren Martin caused me to challenge archaic laws inhibiting the rights of persons with disability & their families resulting in the establishment of: 

“Samantha’s Law” 

https://en.m.wikipedia.org/wiki/Samantha’s_Law

http://www.child.alberta.ca/home/527.cfm 

Section 2-3, Manual Amendments: Policy and Procedures in Family Centred Supports and Services: 

“The Family Support for Children with Disabilities Program to have separate legislation from that of child protection services.” 

Amendment, which, I am currently petitioning the Court to have the legislation formally named in tribute to Samantha, the child, from which amendment evolved:

http://www.petitiononlinecanada.com/petition/samanthas-law/67

While I appreciate that the Ministry refers to our history as “a learning experience” for them. For us, the absence of our child will forever hold an empty space in our hearts and lives that we must constantly strive to survive. The sole consolation that we may take is the hope that archaic perspectives towards individuals with disability may begin to change and with this – “Samantha’s Law” – other loving families, their children and constitutional rights will better protected in the future. 

Society appears to be more accepting of diversity, however, legislation to protect basic human rights of individuals with disability largely lags behind. And, enforcement of law that does exist, tends to fail our most vulnerable. We must strive to alter the past so that the future holds better promise of constitutional adherence to law. Enforcement must not only be for the general public, but also include members of Government Authority who breach legislation. Forcing families to relinquish custody and out of home placement of their loved one with medical diveristy is no different than the archaic practice of hiding persons with disability in institutions. 

Often, where no law exists, the Courts do have the ability to establish decisions based upon precedence set in neighbouring jurisdictions… This is our greatest hope for all: Recognition that our daughter’s life held significance as she continues to live on by aiding others in need. 

In a nutshell, this is our story, Samantha’s far too short life and death… My baby girl, loved so much that we let go and will always have to live with the cost of trust. While I cannot go back in time to change my family’s outcome, I can strive to help others in similar dire need, protect their rights to Family-Centred Care Practice. That is Samantha’s legacy of hope.

-VM

Samantha’s Law on Facebook:

https://m.facebook.com/SamanthasLaw/

Justice for Samantha Martin: 

https://m.facebook.com/groups/JusticeforSamanthaMartin/

The Samantha Martin Story: 

https://youtu.be/DqafFSA1s08 

#AlbertaPrimetime 2013 #SamanthasLaw 

These moms are building a forever home for their autistic children

February 1, 2019

https://www.washingtonpost.com/lifestyle/2019/01/29/faced-with-few-options-these-moms-are-building-home-their-adult-autistic-children/

These moms are building a forever home for their adult autistic children

Housing complex would integrate residents with special needs into the larger community

 

Susan Wallitsch, here with her son Frank, is working with other parents of developmentally disabled adults to build permanent housing for them. (Photo courtesy of Susan Wallitsch)

By Tara Bahrampour

January 29

Susan Wallitsch is the primary caregiver for her 27-year-old son Frank, who is autistic and functionally nonverbal. A few years ago, when she had a health crisis and was temporarily unable to care for him, the solutions she found were limited — and troubling.

She could look for a group home — but most have long waiting lists and would likely not accept Frank because he has behavior problems. She could apply for funding to put him in his own apartment with a 24-hour caregiver — but in that kind of isolated situation, the rate of abuse for adults with developmental disabilities is alarmingly high. Or, she was told, “you take him to the police station and you drop him off and you leave him.”

Those stark scenarios underlined the agonizing dilemma that parents of severely autistic children face: As they contemplate their own old age and mortality, they don’t know what will happen to the children they’ve spent their lives caring for.

Keep Reading

[This autistic boy’s classmates had never heard him speak. At graduation, he took the mic.]

In the case of Wallitsch, who is an attorney, the lack of better options spurred her to action. She and another attorney friend, Mary Anne Oemichen, also the mother of an autistic adult, began meeting at a cafe with several other parents of developmentally disabled adult children. Getting together each week over two years, they came up with a plan to build an apartment complex that would offer their children community and a place to grow old.

They took the idea, which they called Home Of Our Own, to a local affordable housing developer, Wisconsin Housing Preservation Corp., which agreed to kick in $500,000, secured an option on a six-acre parcel and retained architects to draw up a plan. They have applied for a low-income tax credit program, and the families are fundraising to try to gather another $500,000 toward the project’s estimated $8 million cost.

“There’s so much interest and so much demand for this type of housing,” said Mary Wright, WHPC’s president, who described the project as “a bit of an experiment.”

“If we can figure out a way to make this happen, we are more than happy to try to do this in other communities and I hope that nationally this can be replicated,” she said.

 

Architectural rendering of Home Of Our Own, which plans to integrate adults with developmental disabilities into the larger community. (Midwest Modern/Wisconsin Housing Preservation Corp.)

The need is vast and growing, said Kim Musheno, vice president of public policy for the Autism Society of America. In 2018, the CDC determined that about 1 in 59 children is diagnosed with autism spectrum disorder, and over the next decade, an estimated 500,000 of them will enter adulthood, she said, adding that nearly 424,000 are on waiting lists for residential services.

In the face of this, Musheno said, more parents around the country are starting their own initiatives.

“The federal and state governments are falling way short of the need for accessible, affordable residential options for people with autism and other developmental disabilities,” she said. “I like this project because the parents are working to ensure that the housing project is integrated in the community so that the residents are not isolated. Most people with autism and other disabilities do not want to live in institutional-like settings. They want self-determined lives just like everyone else.”

The first phase of the complex, to be built in rural New Glarus, Wis., would have 40 units, a quarter of which would be reserved for adults with developmental disabilities such as autism or cerebral palsy, who would live there with caregiver assistance. The rest would be affordable housing for people earning $22 per hour or less, who have limited housing options in the area.

The founding families insisted on several points: Home Of Our Own would be open to people with disabilities at any level of severity; income would not be a barrier; and it would be an integrated setting in which their children and others with disabilities would live in a community with people who do not have disabilities. The complex would have communal spaces, gardens and walking paths, and the founders envision a range of people, from young workers to retirees, living there.

“In the end, everybody wants the opportunity to be independent and to be social and to be part of a community,” said Oemichen, whose 25-year-old daughter Amy is functionally nonverbal.

 

Mary Anne Oemichen and Susan Wallitsch hope a new housing model will allow their children, Amy and Frank, shown here, to live independently. (Photo courtesy of Mary Anne Oemichen)

The adults with disabilities would pay rent, which will be scaled to their income (along with holding jobs, they also receive Social Security), and qualify for home care through Medicaid. But rather than being isolated in apartments with a caregiver and little oversight, they would live alongside neighbors who knew them and could speak up if anything seemed amiss.

The development might also incorporate special design features such as doubling up on drywall to accommodate residents who are sensitive to sound, installing blackout shades for those sensitive to light, or adding a safe room for caregivers who need to separate themselves from residents who become aggressive, Wright said.

[Bystanders were horrified. But my son has autism, and I was desperate.]

In March, the group will learn whether it got the tax credits. If so, they anticipate opening the facility by the fall of 2020.

 

Mary Anne Oemichen hopes her daughter Amy, who has autism, can live in an integrated community. (Photo courtesy of Mary Anne Oemichen)

“Part of our role will be to build the community and create opportunities for people to spend time together,” Wallitsch said, adding that her son is excited about the prospect. “To live where other people live, people closer to his own age, to make new friendships, to live somewhere other than where his mother and father live.”

Frank communicates by pointing to letters on a letter board and spelling words. Recently, listening to his family discussing the project, “He was really thrilled about it and he spelled: ‘SHOUT OUT,’” Wallitsch said.

Unsure whom that was directed toward, she asked if he meant it for his sister or his caregiver. It was neither of those. Frank returned to the letter board.

He spelled: “SHOUT OUT MOM.”

Addressing Rhetoric System-Speak – Velvet Martin

January 15, 2019

Addressing Rhetoric System-Speak – VM, 01-2019

Rant: Admittedly, hackles are up when I hear rhetoric System-speak, phrases such as: ”That is to be expected”, “That’s unfortunate”, “Well-monitored” make my blood boil. 

As I age, I may be getting crankier because my tolerance towards indifference and misinformation is at a low. Particularly, in a world where evidence is abundant even within mainstream media which most persons have access to; certainly professionals in humanities do. There is simply no excuse for defending a broken system that habitually devastates lives.

I was once passive, gentle-spirited, non-confrontational towards Authoritative figures and minions. After-all, professionals “must” be correct. Never-mind niggling internal warnings to the contrary. That was then – before they KILLED my own child – this is now.

“She was medically-fragile”. Those seven broken limbs, which include 3 femur (thigh bone) breaks, “must” be because of her rare Syndrome. “Believe me, if we had any concerns, we’d act.” “You’re only one voice.” “She’s routinely seen by numerous medical professionals.” “Placements are well-screened and monitored”. “We shouldn’t question the System.” Except, each and every statement was proved to be a bogus ascertainment.

Bone density tests were “normal”. Medical billing records demonstrate lack of services for 3 consecutive years. No social-worker made face-to-face visits for lapses of up to 14 months. Three schools in differing cities each provided similar incident reports documenting provision of spoiled food, direction to “fill” the child up “with water” although she weighed but 49 pounds at 13 years of age; bruises, contusions, inappropriate apparel… The list goes on and on.

Do NOT continue to spread these meaningless assurances. Just don’t. I will not tolerate lies. I will call you and any other being out with evidence to the contrary.

My child is not the exception. Rather, she is but one individual amongst hundreds of victims the previous Government chose to hide and whom current one continues to evade. Six-hundred and eighty-five hidden child fatalities within one Province alone!

As a journalist remarked, “The System is a serial-killer”. Were anyone else other than Government responsible for the deaths of hundreds of victims, there would be Public outrage; demands for Police investigation and prosecution.

Not only have I been a recipient of support services, I have actively worked in rehabilitation with youth and adults, spent years as hospital liaison to administration and provided care to to children while family gained strength for reunification. I have walked the talk intimately and followed the plight of Elders who offer decades of generational wisdom.

I have grieved and supported others whose children were failed to death. I have attended so many Court sessions involving child fatalities that I’ve sadly lost count of the victim toll. Never once have I seen the Office of the Child Advocate present. Rather, it is always familiar faces, caring grass-roots individuals and organizations without the benefit of compensation for time and efforts.

It is genocide, flat out Eugenics. Families wrongly targeted due to race, extraordinary medical conditions, martial status, education, poverty, false accusation, faulty screening.

Meanwhile, others who repeatedly wrong children continue to do so unscathed. Some connected with more than single fatalities still permitted access to vulnerable lives!

I was there along with others pushing for legal release from Publication Bans to promote accountability, change and respect for those innocent lives diminished by unfavourable, laws. Legislation which shielded wrongdoers and System workers – under guise of protecting victims and surviving loved ones – from inspection.

I cannot ethically remain silent, allowing misinformation to spread. I will not tolerate ignorance nor falsehoods. Minimization of injury to our most vulnerable persons – children, individuals with diverse ability and our elders – is frankly, disgusting.

I will say the same directly to anyone’s face who claims otherwise. As long as I am breathing, I will not allow bullies to perpetuate harm without a challenge. Neither amongst those directly wielding a hand, nor others who protect the System through their silence or assertion that all is well when it clearly is not.

“the medical kids in care I have met had needs that were too complex for cognitively challenged parents, or parents with active addictions affecting ability to parent.”

I take issue with this statement. It is prejudiced, callous and incorrect to assume individuals with challenges cannot be taught skills to successfully parent. I have known parents with cognitive impairment and Fetal Alcohol Spectrum Disorder who are loving and capable. At times, extra supports may be required, but who hasn’t needed a helping hand in life during low points!

It is both beneficial to families and cost-effective for the System to provide supports directly. Cognitively-challenged persons do not love their children less than those more academically-inclined. Disability need not equate poor parenting. 

Prejudice continues pervasively in Society towards numerous groups of persons based upon race, culture, ability, education, marital status. Individuals who grew up under the System’s care are also penalized for lacking extended family support!

Alberta legally permitted the sterilization of persons some considered “mentally defective”. Hell, those scholars who inflicted suffering on vulnerable lives continue to be celebrated with roads and parks named for them even today! Those ugly fkers robbed individuals of the right to parent and benefit of care in elder years by extended kin. This is not history of centuries ago; rather, I have known and call some of the survivors friends who are living here and now with the aftermath of such attitudes towards fellow neighbours. 

A female with strabismus (crossed eyes) due to premature birth was institutionalized at Alberta Mischener Centre. She has been in a stable, loving marriage for decades. When she and her spouse decided to begin a family, found they could not conceive. They were devastated to discover her fallopian tubes had been severed; sliced repetitively during surgery in childhood to ensure she could not procreate. The woman is my good friend. She is an amazing person, a kind-hearted soul, advocate and speaker who would have been a wonderful, caring mother. 

A man I’ve come to know is Indigenous; his first language Cree. He was wrongly labeled cognitively-challenged because he could not communicate in English. He was also Institutionalized and victimized of reproductive rights. 

It is not strictly cognitive delays which are targeted either. Physical disability is preyed upon too. Examples:

A couple – both with Cerebral Palsy who utilize wheelchairs for mobility – became immediate targets upon birth of their child. Forced to prove themselves worthy of parenting to strangers. The assigned caseworker knew so little about CP that she actually asked the couple whether she ought to “wear a mask” to prevent “catching” their condition. She also inquired whether or not the baby would develop Cerebral Palsy. Ffs, these ignorant persons hold Authority to make life-altering decisions!

“Marie” (a pseudonym) a single mother parenting 2 young girls, was diagnosed with Multiple Sclerosis. As the disease progressed, daily tasks became physically challenging so mom responsibly approached Human Services for support. Instead, she was offered literature on adoption for her children. Mom wisely sought Media attention.  Immediately, the Government responded to Public outcry claiming, “misunderstanding” and promised in-home assistance. That arrangement lasted a few months, long enough for publicity to die down. The Ministry then told Mom that it would no longer provide funding for services so she fled the Province rather than risk her precious children be taken by the System. 

This is the reality for far too many families who have done nothing to warrant invasive tactics. There are covert threats transpiring all the time. It matters little whether families are loving and simply tasked with extraordinary circumstances. Innocent of any wrong-doing, families can and do become targets handled callously by Authorities as if they have actually intentionally caused harm to a child. 

Other examples include parents who are vocal for their children’s rights to inclusive education. Advocacy is falsely labeled , “Difficult to work with”. Frequently basic human rights are trampled as the families are bullied into silence. No one is immune: This scenario happened to a well-spoken, mild-mannered teacher. When they attempted to advocate for greater supports needed for their own child with special needs in the education system, threat of Guardianship occurred. 

Not a single one of us is infallible to change in health – physical or mental – through sudden accident, disease or natural aging processes. 

Certainly there are “incredible” foster placements and in unique circumstances, the sole option. However, nothing can take the place of kin. Individuals search lifetimes to reconnect to missing roots, culture, loved ones. 

Unless abuse or severe neglect exists, there is no logical nor ethical grounds not to support natural families – be that teaching skills or providing funding for extraordinary services – directly as opposed to displacing lives.

These issues are well-expressed by colleagues of Family-Centred Care Practice that participated in an Alberta Primetime Segment: 

Sincerely,

Velvet Martin

#SamanthasLaw

Parents relinquish custody to get son medical treatment

January 6, 2019

 

https://www.fatherly.com/news/parents-relinquish-custody-son-medical-treatment/

Parents Give Up Custody of Their Son So He Can Receive Costly Medical Treatment

It’s happening all across the country.

By Amanda Tarlton

Jan 03 2019, 11:44 AM

 

When Jim and Toni Hoy’s adopted son Daniel began showing signs of severe mental illness, they were willing to do anything to get him help. And in their case, that meant relinquishing custody of the then-12-year-old so he could receive the necessary medical treatment that was too expensive for the Hoys to afford, even with insurance.

“To this day, it’s the most gut-wrenching thing I’ve ever had to do in my life,” dad Jim says of the day he told Daniel that they were turning him over to the state. “I was crying terribly. But it was the only way we figured we could keep the family safe.”

After Daniel started experiencing violent outbursts (he even threw one of his brothers down the stairs), doctors determined that he needed residential services to protect himself and the rest of the Hoy family. There was one problem: both the Hoy’s private health insurance and Medicaid wouldn’t cover the steep cost.

So the couple chose the only option they had, which is a process known as custody relinquishment. By giving up their son, the state of Illinois would be required to pay for any medical treatment he needed, including specialized care. According to a study by the Government Accountability Office, over 12,000 families in 19 states have done the same thing.

“So you get residential services, but then you’ve given up custody of your child,” the Hoy’s attorney, Robert Farley, Jr., explains. “Which is, you know, barbaric. You have to give up your child to get something necessary.”

Fortunately, the Hoys were able to sue the state and regain custody of Daniel when he was 15. They were also awarded the funds to pay for his continuing mental health services.

Now 24, Daniel has been out of treatment for six years and lives near his parents with his girlfriend and their daughter. And while both Jim and Toni are grateful that he was able to receive the help he needed, they still believe family is just as important.

“Kids do need services. But they also need the support of their families,” stresses Toni. It’s a sentiment that her son echoes, saying, “Sometimes it’s so hard to do it for yourself. It almost helps to know that I’m doing it for myself, but I’m also doing it for my family and for our relationship.”

 

Mom of Autistic Boy Threatened with Children’s Services

January 4, 2019

https://www.thesun.co.uk/news/8107676/mum-autism-note-neighbour-screaming-social-services/

‘STOP THAT KID YELLING’ Mum of autistic boy, 7, finds furious note from neighbour threatening to report her to social services
The note read: “We all getting sick of the yelling and also ring your landlord.”
By Gerard du Cann
2nd January 2019, 11:31 pm
Updated: 2nd January 2019, 11:44 pm

THE mother of an autistic boy woke up in the New Year to find a furious note from her neighbour threatening to report her to social services if her son didn’t stop yelling.

Solo mum-of-three Ana Gray, 28, found the note in the letter box of her home in Napier, New Zealand.

Ana Gray with Wiremu, 7, who has been diagnosed with autism and yells as a safe outlet

The note read: “If you don’t stop that kid yelling I will ring child support and report you. We all getting sick of the yelling and also ring your landlord.”

The New Zealand Herald reported that the child, seven-year-old Wiremu, was diagnosed with autism and Global Development Delay (GDD) five years before.

Yelling and screaming is one of the ways Wiremu is able to deal with his disorder, and is a safe means of outlet his emotions.

Gray told the Herald that she knows the yelling gets on people’s nerves, but said the note had caused extra stress.

The note was not signedANA GRAY
2
The note was not signed
She said: “I would have preferred being spoken to face to face so I can explain our situation.

“It is very hard for me doing this on my own.”

This complaint was the first she has received in the eight months since she moved into the flat.

Because the note wasn’t signed, she has no way of knowing who sent it.

On a Facebook post, Gray apologised to her neighbours for her “disruptive” son.

She wrote: “We’re only trying to live life as each day goes by in the hopes that things will only get better for us.”

Help may be on the way, with Wiremu waiting to see a paediatrician.

Currently Gray resorts to distracting the child with her phone, which has his favourite game – Minecraft – on it.

She said: “I love my son to pieces. He may not be perfect to others but he is perfect to me.”

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Desperate parents relinquish custody to access mental health help for their child

January 4, 2019

https://www.npr.org/sections/health-shots/2019/01/02/673765794/to-get-mental-health-help-for-a-child-desperate-parents-relinquish-custody

To Get Mental Health Help For A Child, Desperate Parents Relinquish Custody

LISTEN· 6:28

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January 2, 20192:31 PM ET

CHRISTINE HERMAN

FROM

SIDE EFFECTS PUBLIC MEDIA

Toni Hoy, at her home in Rantoul, Ill., holds a childhood photo of her son, Daniel, who is now 24. In a last-ditch effort to get Daniel treatment for his severe mental illness in 2007, the Hoys surrendered parental custody to the state. “When I think of him, that’s the picture I see in my mind. Just this adorable, blue-eyed, blond little sweetie,” Hoy says.

Christine Herman/Illinois Public Media

When Toni and Jim Hoy adopted their son Daniel through the foster care system, he was an affectionate toddler. They did not plan to give him back to the state of Illinois, ever.

“Danny was this cute, lovable little blond-haired, blue-eyed baby,” Jim says.

Toni recalls times Daniel would reach over, put his hands on her face and squish her cheeks. “And he would go, ‘You pretty, Mom,’ ” Toni says. “Oh my gosh, he just melted my heart when he would say these very loving, endearing things to me.”

But as Daniel grew older, he changed. He began to show signs of serious mental illness that eventually manifested in violent outbursts and nearly a dozen psychiatric hospitalizations, starting at age 10. Doctors said he needed intensive, specialized care away from home — institutional services that cost at least $100,000 a year.

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The family had private insurance through Jim’s job, and Daniel also had Medicaid coverage because he was adopted. But neither insurance would pay for that treatment. Exhausted and desperate, the Hoys decided to relinquish custody to the state. If they sent Daniel back into the foster care system, the child welfare agency would be obligated to pay for the services he needed.

“To this day, it’s the most gut-wrenching thing I’ve ever had to do in my life,” Jim says. He went to the hospital and told Daniel, then 12, that they were legally abandoning him, so child welfare could take over. “I was crying terribly. But it was the only way we figured we could keep the family safe.”

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Two-thirds of states don’t keep track of how many families give up custody to help the child get mental health services. But a study by the Government Accountability Office found that back in 2001, more than 12,000 families in 19 states did exactly that.

Today in Illinois, state records show that dozens of children enter state custody this way each year, despite a 2015 state law aimed at preventing it. And new data collected by the University of Maryland for the federal government finds Illinois is not alone at failing to address this issue.

Mental health advocates say the problem is one of “too little, too late.” Even when states try to help children get access to treatment without a custody transfer, the efforts come too late in the progression of the child’s illness.

The advocates blame decades of inadequate funding for in-home and community-based services across the country — a lack of funding that has chipped away at the mental health system. Without that early intervention, children deteriorate to the point of being needlessly hospitalized and requiring costly residential care.

Until that underlying problem is addressed, child advocates say, the problem of families trading custody for treatment will never truly be solved.

Out of options

Daniel grew up with the Hoys, the youngest of their four children, in Ingleside, just north of Chicago. As a baby, he had been severely neglected in his birth family — starved and left for dead. The early trauma Daniel experienced very likely affected his brain development, doctors say.

Toni home-schooled her children until she had to return to work full-time in 2005. She says Daniel, who was 10 at the time, just fell apart.

“After six weeks of being in a public school classroom — something kids do every day — he couldn’t emotionally handle it and had his first hospitalization,” Toni says.

Daniel’s post-traumatic stress disorder and severe anxiety manifested in violent outbursts.

“He held knives to people’s throats,” Toni says. “He tried putting his fingers and his tongue in the light sockets. He broke almost every door in the house.”

In the car, there were times when he’d reach over and grab the wheel while Toni was driving, to try to force the car into oncoming traffic. Other times, he would lash out at his siblings.

“At the same time, he’s a little boy,” she says. “He didn’t want to be that way. He didn’t like being that way.”

Despite Toni and Jim’s efforts to help their son with therapy and medication, the violence escalated, and Daniel was repeatedly hospitalized.

Although his doctors and therapists said he needed residential treatment, which would be at least $100,000, both the family’s private health insurance, and Daniel’s secondary Medicaid coverage, denied coverage.

So the Hoys applied for a state grant meant for children with severe emotional disorders. They also asked for help from Daniel’s school district, which is supposed to cover a portion of the costs when students need long-term, off-site care. They were denied both.

“We were told we had to pay out of pocket for it,” Toni says.

Then one night, Daniel picked up his brother Chip, threw him down the stairs and punched him over and over before their dad pulled the boys apart.

Daniel went back to the hospital for the 11th time in two years. That’s when the Illinois Department of Children and Family Services gave the Hoys an ultimatum.

“[They] basically said, ‘If you bring him home, we’re going to charge you with child endangerment for failure to protect your other kids,’ ” Toni remembers. ” ‘And if you leave him at the hospital, we’ll charge you with neglect.’ ”

“If any of our other kids got hurt, once we brought him home, they would take the other kids,” Jim says. “They put our backs against the wall, and they didn’t give us any options.” So the couple left Daniel at the hospital.

Once the state’s child welfare agency steps in to take custody, the agency will place the child in residential treatment and pay for it, says attorney Robert Farley Jr., who is based in Naperville, Ill.

“So you get residential services, but then you’ve given up custody of your child,” Farley says. “Which is, you know, barbaric. You have to give up your child to get something necessary.”

Taking it to the courts

The Hoys were investigated by DCFS and charged with neglect. They appealed in court and the charge was later amended to a “no-fault dependency,” meaning the child entered state custody at no fault of the parents.

They didn’t know where Daniel was for several weeks, until he picked up the phone from the group home where he had been placed and called to tell them he was OK.

Losing custody meant Toni and Jim could visit Daniel and maintain contact with him, but they could not make decisions regarding his care.

Over the next three years, Daniel lived at three different residential treatment centers. One was five hours away by car. His parents visited as often as they could.

Toni spent months reading up on federal Medicaid law, and she learned the state-federal health insurance program is supposed to cover all medically necessary treatments for eligible children.

The Hoys hired a lawyer and, two years after giving Daniel up, they sued the state in 2010.

Six months later, they settled out of court and regained custody of Daniel, who was 15 by then. They also got the money to pay for Daniel’s care on their own.

Around the same time, Farley, the attorney, decided to take on the issue on behalf of all Medicaid-eligible children in the state. He filed a class-action lawsuit, claiming Illinois illegally withheld services from children with severe mental health disorders.

“There [are] great federal laws,” he says. “But someone’s not out there enforcing them.”

In his lawsuit, Farley cited the state’s own data, showing that 18,000 children in Illinois have a severe emotional or behavioral disorder, yet only about 200 of them receive intensive mental health treatment.

As part of a settlement, a federal judge ordered Illinois Medicaid officials to completely overhaul the state system, so that kids get home- and community-based treatment in the early stages of their illness.

The deadline for the state to roll out those changes is January.

A law that didn’t fix the problem

While these legal battles were taking place, Illinois lawmakers began their own work to ensure that parents no longer have to relinquish custody to get their kids the help they need.

The Custody Relinquishment Prevention Act, which became law in 2015, orders six state agencies that interact with children and families to intervene when a family is considering giving up custody to get access to services.

“I think the question is: Shouldn’t government be stepping in and doing their job? And they’re not,” says Democratic State Rep. Sara Feigenholtz. “We just want them to do their job.”

B.J. Walker, head of Illinois’ child welfare agency, says the reasons for custody relinquishments are complex.

“If law could fix problems, we’d have a different world,” she says.

In some places, waitlists for residential treatment beds for kids in crisis can be months long.

But even when beds are available, Walker says, some facilities are simply unwilling or unable to take a child who has a severe mental health condition or a co-occurring medical condition.

Out of desperation, some parents will give up custody in the hope of getting their child to the top of the waiting list. But that doesn’t necessarily solve the problem.

As ProPublica Illinois reports, many foster children languish for months in psychiatric wards that are ill-equipped to provide long-term care because the state is unable to secure a placement for them in an appropriate therapeutic setting. Walker’s agency is being sued for allegedly forcing children to “remain in locked psychiatric wards, causing immense harm,” for weeks or months after they’ve been cleared for discharge.

The underlying problem

Neil Skene, spokesman for Illinois’ child welfare agency, says there are more options for families like the Hoys today than there were a decade ago. That includes a crisis-stabilization program launched in 2017 that aims to help families get access to services.

When the child welfare agency is blamed for this problem, Skene says, it’s like when a pitcher comes in at the end of a losing game to save the day and gets tagged with the loss.

Some mental health advocates agree it’s not fair to fault the state’s child welfare agency for a problem that stems from a chronically underfunded mental health system.

Heather O’Donnell, a mental health advocate who works for Thresholds, a behavioral health treatment provider in Chicago, blames years of inadequate funding in Illinois and across the U.S.

Early-intervention services are either not available or not accessible because insurance companies deny coverage.

“If these kids had leukemia or diabetes, they would’ve gotten help long, long before,” O’Donnell says. “It’s because they have a mental health condition that causes their behavior to be challenging and erratic. And as a society, we sweep these conditions under the rug until there’s a crisis. We just wait for tragedy.”

“What Illinois needs to put into place is a system that helps these families early on, so that these kids never get hospitalized,” O’Donnell says.

Beth Stroul, who has been studying the problem of custody relinquishment for decades, agrees. She is the lead researcher on a new study — commissioned by the federal government and carried out by the University of Maryland — that explores why the problem persists to this day.

Stroul says other states, including Georgia and New Jersey, have passed laws and stepped up efforts to help children get treatment while in parental custody.

“But those strategies, in and of themselves, are not sufficient unless there are home- and community-based services available that provide the supports and treatment needed to keep children and families safe in the community,” Stroul says.

The difference treatment and family can make

Daniel Hoy is now 24 and has been out of residential treatment — and stable — for six years.

He says treatment was tough, and he would not have gotten better without his parents’ love and support. “It was never a question in my mind that my parents would always be there for me,” he says. “Sometimes it’s so hard to do it for yourself. It almost helps to know that I’m doing it for myself, but I’m also doing it for my family and for our relationship.”

Daniel now works nights for a shipping company and lives with his girlfriend and their toddler daughter in central Illinois, not far from his parents.

Daniel Hoy spends time with his daughter, Sofie, near their home in central Illinois. He has been stable and out of residential treatment for mental health issues for six years. The treatment was tough, he says, and he would not have gotten better without his parents’ love and support.

Vinnie Manganello/WFYI

“I just love having a relationship with him,” Jim says. “I feel so privileged that [when] he’s having a bad day, he comes over and talks to us about it.”

Toni says, looking back, that it’s shameful that families get torn apart by a system that’s supposed to be supportive.

She is grateful they made it through intact. Other families that have gone through this same thing, she says, have lost touch with their child forever. “Kids do need services,” Toni says. “But they also need the support of their families.”

When they have both, she says, a lot of kids can be a lot more successful.

This story is part of NPR’s reporting partnership with Side Effects Public Media and Kaiser Health News. A longer version of this story appears in The Workaround podcast. Christine Herman is a recipient of a Rosalynn Carter fellowship for mental health journalism. Follow her on Twitter: @CTHerman

Samantha Martin vs Alberta

December 21, 2018

2011

CANLII Samantha Martin vs. Alberta for Costs of Counsel:

http://www.canlii.org/en/ab/abqb/doc/2011/2011abqb634/2011abqb634.html
Home › Alberta › Court of Queen’s Bench › 2011 ABQB 634 (CanLII)

Martin Estate (Samantha) v Alberta, 2011 ABQB 634 (CanLII)

Date:2011-10-17
Docket:1103 08609
Citation:Martin Estate v Alberta, 2011 ABQB 634 (CanLII)

Legislation cited
Canada Evidence Act, RSC 1985, c C-5 — 5
Fatality Inquiries Act, RSA 2000, c F-9 — 35; 48; 50; 53; 53(2)

Decisions cited
Alberta (Minister of Justice) v. Bjorgan, 2005 ABCA 309 (CanLII)
British Columbia (Minister of Forests) v. Okanagan Indian Band, [2003] 3 SCR 371, 2003 SCC 71 (CanLII)
Little Sisters Book and Art Emporium v. Canada (Commissioner of Customs and Revenue), [2007] 1 SCR 38, 2007 SCC 2 (CanLII)
R. v. Caron, [2011] 1 SCR 78, 2011 SCC 5 (CanLII)
R. v. Rain, 1998 ABCA 315 (CanLII)
R. v. Rowbotham, 1988 CanLII 147 (ON CA)

Court of Queen’s Bench of Alberta

Citation: Martin Estate v Alberta, 2011 ABQB 634

Date: 20111017
Docket: 1103 08609
Registry: Edmonton

Between:

Estate of Samantha Martin and Velvet Martin

Applicants
– and –

Her Majesty the Queen In Right of Alberta

Respondent

_______________________________________________________

Memorandum of Decision
of the
Honourable Mr. Justice John J. Gill
_______________________________________________________

I. Introduction

[1] The application raises the issue of a superior court’s authority to order public interest fundingin respect of proceedings taking place before an inferior tribunal.

[2] The Applicants apply for an Order requiring the Respondent, Her Majesty the Queen in Right of Alberta (Alberta), to pay the legal fees of Velvet Martin or the legal fees of her daughter Samantha Martin’s estate to assist the Applicants in participating in a fatality inquiry before a judge of the Provincial Court.

II. The Factual Background

[3] Much of the factual background was set out in the brief filed by Alberta. The relevant facts are as follows.

[4] A fatality inquiry (the Fatality Inquiry) was directed in respect of the death of Samantha Martin pursuant to the Fatality Inquiries Act, R.S.A. 2000, c. F-9 (the Act). The Fatality Inquiry is being conducted by a judge of the Provincial Court of Alberta. The Minister of Justice and Attorney General appointed external counsel, David Syme, as inquiry counsel for the Fatality Inquiry.

[5] The Applicant, Velvet Martin, was granted status as an interested party at the Fatality Inquiry as the mother of Samantha Martin. The foster parents of Samantha Martin were also granted status as interested parties at the Fatality Inquiry. The foster parents retained legal counsel (Tom Engel) to represent them, as did the department of Children, Youth and Family Services (Cherisse Killick-Dzenick).

[6] The Fatality Inquiry commenced on January 17, 2011 and continued through January 21, 2011. It was adjourned on January 21, 2011 to January 27, 2011. On January 27, 2011, counsel for the foster parents sought an adjournment of the inquiry to February 7, 2011 which was granted. The Fatality Inquiry continued on February 7, 2011 through February 11, 2011.

[7] The Applicant, Velvet Martin, has appeared at the Fatality Inquiry every day since it commenced. She has participated by raising objections, objecting to adjournment requests, and communicating with inquiry counsel about evidence.

[8] On February 11, 2011, Velvet Martin appeared at the Fatality Inquiry accompanied by legal counsel (Robert Lee). Legal counsel applied for an adjournment for the purpose of bringing an application before the inquiry judge to appoint counsel for the estate of Samantha Martin and to pay fees of that counsel. The inquiry judge granted the adjournment to March 18, 2011, at which time that application could be heard. Velvet Martin acknowledges that her counsel has also been able to provide her pro bono advice previously during the course of the Fatality Inquiry.

[9] On March 18, 2011, counsel for Velvet Martin advised the Fatality Inquiry judge that he was now bringing the application for funding of legal counsel for the Applicants for the remainder of the fatality inquiry to the Court of Queen’s Bench. The Fatality Inquiry was adjourned to November 2-4, 2011.

[10] While public funding of the Applicants’ legal fees was at times discussed during the Fatality Inquiry, Velvet Martin did not bring an application before the Fatality Inquiry Provincial Court judge seeking a recommendation from the judge that Alberta fund legal counsel to represent her or her daughter’s estate at the Fatality Inquiry.

< *Correct: I did raise the issue of Samantha requiring professional counsel with the Fatality Court Judge; Samantha Martin is the individual whom the Inquiry is about and the purpose of a PFI is to discover conditions that will assist in prevention of future fatalities. The foster people acquired counsel, the Government had a team of lawyers, Samantha had only me to represent her interests. I am not a professional educated in law, I am a mommy dealing with the death of my only daughter; thus, all I knew to do was to verbally request assistance from the Judge and trust the Judicial System to act ethically. No member of the Court made me aware that formal application was needed in order to try and secure professional counsel for Samantha. >

[11] On May 27, 2011, an originating application was filed in the Court of Queen’s Bench seeking an Okanagan order that Alberta fund legal counsel for Velvet Martin, or for the estate of Samantha Martin, for the remainder of the Fatality Inquiry. This type of order is referred to in the case law as an interim or advance costs order or an order for public interest funding.

III. Issue

Should Alberta be ordered to pay Velvet Martin’s legal fees or the legal fees of her daughter Samantha Martin’s estate to assist the Applicants in participating in the remainder of the Fatality Inquiry?
IV. The Law

[12] This application is governed by the principles outlined in R v Caron, 2011 SCC 5 (CanLII), [2011] 1 S.C.R. 78, a case in which the Supreme Court of Canada determined that the inherent jurisdiction of the Alberta Court of Queen’s Bench can extend to ordering public funding in respect of proceedings in the Provincial Court. At para. 6, the Court provided an overview:

As a general rule, of course, it is for Parliament and the provincial legislatures to determine if and how public monies will be used to fund litigation against the Crown, but it has sometimes fallen to the courts to make such determinations. To promote trial fairness in criminal prosecutions, for instance, the courts have in narrow circumstances been prepared to order a stay of proceedings unless the Crown funded an accused in whole or in part: R. v. Rowbotham (1988), 1988 CanLII 147 (ON CA), 41 C.C.C. (3d) 1 (Ont. C.A.); R. v. Rain (1998), 1998 ABCA 315 (CanLII), 223 A.R. 359 (C.A.). In the civil context, British Columbia (Minister of Forests) v. Okanagan Indian Band, 2003 SCC 71 (CanLII), [2003] 3 S.C.R. 371, extended the class of civil cases for which public funding on an interim basis could be ordered to include “special circumstances sufficient to satisfy the court that the case is within the narrow class of cases where this extraordinary exercise of its powers is appropriate” (para. 36). Okanagan was based on the strong public interest in obtaining a ruling on a legal issue of exceptional importance that not only transcended the interest of the parties but also would, in the absence of public funding, have failed to proceed to a resolution, creating an injustice. In Little Sisters Book and Art Emporium v. Canada (Commissioner of Customs and Revenue), 2007 SCC 2 (CanLII), [2007] 1 S.C.R. 38 (“Little Sisters (No. 2)”), the majority affirmed that

the injustice that would arise if the application is not granted must relate both to the individual applicant and to the public at large. This means that a litigant whose case, however compelling it may be, is of interest only to the litigant will be denied an advance costs award. It does not mean, however, that every case of interest to the public will satisfy the test. [para. 39]

Neither Okanagan norLittle Sisters (No. 2) concerned an interim funding order made in respect of matters proceeding in a lower court. Nevertheless, the Alberta courts were faced here with a constitutional challenge of great importance.

And at para. 30:

Of course the very plenitude of this inherent jurisdiction requires that it be exercised sparingly and with caution. In the case of inferior tribunals, the superior court may render “assistance” (not meddle), but only in circumstances where the inferior tribunals are powerless to act and it is essential to avoid an injustice that action be taken. This requirement is consistent with the “sufficiently special” circumstances required for interim costs orders by Little Sisters (No. 2), at para. 37, as will be discussed. [Emphasis added]

[13] The Supreme Court of Canada went on to consider the concern of avoiding an injustice, at paras. 38 and 39:

Clearly, this case is not Okanagan where the Court viewed the funding issue from the perspective of a proposed civil trial not yet commenced. We are presented with the issue of public interest funding in a different context. Nevertheless, Okanagan/Little Sisters (No. 2) provide important guidance to the general paradigm of public interest funding. In those cases, as earlier emphasized in the discussion of inherent jurisdiction, the fundamental purpose (and limit) on judicial intervention is to do only what is essential to avoid an injustice.

The Okanagan criteria governing the discretionary award of interim (or “advanced”) costs are three in number, as formulated by LeBel J., at para. 40:

1. The party seeking interim costs genuinely cannot afford to pay for the litigation, and no other realistic option exists for bringing the issues to trial – in short, the litigation would be unable to proceed if the order were not made.

2. The claim to be adjudicated is prima facie meritorious; that is, the claim is at least of sufficient merit that it is contrary to the interests of justice for the opportunity to pursue the case to be forfeited just because the litigant lacks financial means.

3. The issues raised transcend the individual interests of the particular litigant, are of public importance, and have not been resolved in previous cases.

Even where these criteria are met there is no “right” to a funding order. As stated by Bastarache and LeBel JJ. for the majority in Little Sisters (No. 2):

In analysing these requirements, the court must decide, with a view to all the circumstances, whether the case is sufficiently special that it would be contrary to the interests of justice to deny the advance costs application, or whether it should consider other methods to facilitate the hearing of the case. The discretion enjoyed by the court affords it an opportunity to consider all relevant factors that arise on the facts.

While these criteria were formulated in the very different circumstances of Okanagan and Little Sisters (No. 2), in my opinion they apply as well to help determine whether the costs intervention of the Court of Queen’s Bench was essential to enable the provincial court to “administer justice fully and effectively”, and may therefore be said to fall within the superior court’s inherent jurisdiction. [Emphasis added]

[14] In summary, while the Court of Queen’s Bench has authority to order the public funding sought in this case, this authority is to be exercised sparingly and with caution. Specifically, this Court can render such assistance “only in circumstances where the inferior tribunals are powerless to act and it is essential to avoid an injustice that action be taken”: Caron at para. 30.

V. Analysis

[15] It is commendable how involved the Applicant Ms. Martin has been in the Fatality Inquiry. Apparently she has been present at the inquiry everyday and has taken an active role in the proceedings. It is also understandable why she would want to have her own legal counsel to assist her.

[16] To determine the issue, this Court has to apply the test from Caron:

1) Are the circumstances in this case such that the inferior tribunal, the Fatality Inquiry judge, is powerless to act?

2) Is it essential to avoid an injustice that this Court take action?

1) Is the Fatality Inquiry judge powerless to act?

[17] The Alberta Court of Appeal, in Alberta (Minister of Justice) v Bjorgan, 2005 ABCA 309 (CanLII), 417 A.R. 245, reviewed the power of a judge at a fatality inquiry to order the payment of an interested party’s legal fees. At para. 11:

“We therefore conclude that the duty of procedural fairness cannot provide a fatality inquiry judge with the authority to mandate that funded legal counsel be provided to a target of the inquiry. While it may be desirable to provide this authority to public inquiry commissioners in light of social policy considerations, such authority would have to be specifically provided for in the governing legislation. As it currently stands, a fatality inquiry judge has the authority only to: (1) recommend that an individual obtain legal counsel; (2) recommend that an individual apply for legal aid if unable to afford counsel; (3) recommend that the Crown pay an individual’s legal costs in those circumstances where it is considered necessary.”

[18] The Applicants submit that the Fatality Inquiry judge is powerless to act because all she can do is recommend that the Crown pay an individual’s legal costs in those circumstances where it is considered necessary.

[19] In this case, the Applicants did not request that the Fatality Inquiry judge make such a recommendation. We do not know whether or not the Fatality Inquiry judge would have made such a recommendation if asked, nor do we know whether or not the Crown would pay the fees if the Fatality Inquiry judge were to make such a recommendation.

< *As expressed, a plead for assistance certainly was posed to the Fatality Court Judge, Marilena Carminati. It was the Judge, herself, that indicated unfamiliarity whether or not she had jurisdiction to do so and this is why a higher Court was consulted for its expertise. Rendering next points 20 – 23 moot. >

[20] What is important at this stage of the analysis, however, is to assess whether or not the Fatality Inquiry judge is powerless to act. Clearly, that is not the case. The Fatality Inquiry judge can make a recommendation to the Crown. Making recommendations is an essential component of a fatality inquiry judge’s statutory jurisdiction under the Act: s. 53(2).

[21] The Act also gives a fatality inquiry judge broad powers over procedural matters. For example, s. 37.1 states:

37.1(1) A judge who conducts a public fatality inquiry

(a) shall, before receiving any evidence at the inquiry, and
(b) may, at any time during the inquiry

hold a conference under this section.

(2) At a conference referred to in subsection (1) the judge may give directions respecting

(a) the issues that will be or are under consideration at the public fatality inquiry,
(b) procedural matters and matters of fairness related to the public fatality inquiry, and
(c) any other issues that the judge considers have arisen or will arise in connection with the public fatality inquiry.

[22] The Provincial Court judge conducting a fatality inquiry is in the best position to determine the scope of the inquiry and whether or not a participant requires the assistance of legal counsel. In light of this fact and a fatality inquiry judge’s broad powers over procedural matters, it is reasonable to assume that a fatality inquiry judge would recommend that the Crown pay an individual’s legal costs if that judge thought it was necessary in the circumstances. Additionally, it is reasonable to assume that any such recommendation would carry some weight and be considered seriously by the Crown given the judge’s unique position. If the Crown accepted the recommendation, funding would be provided.

[23] I conclude, therefore, that the Fatality Inquiry judge is not powerless to act and can assist participants who seek publicly funded legal counsel by making recommendations to the Crown where it is considered necessary. The power to make a recommendation is of significance. A participant who requires the assistance of legal counsel should formally request assistance from the fatality inquiry judge. The Applicants failed to do so in this case.

2) Is it essential to avoid an injustice that this Court take action?

[24] This case presents the issue of public interest funding in the context of a public fatality inquiry. This is a different context from both the Okanagan case, where the Court viewed the funding issue from the perspective of a proposed civil trial not yet commenced, and the Caron case, where an accused was defending a regulatory prosecution in the provincial court and significant constitutional issues had been raised.

[25] The nature and purpose of a public fatality inquiry is as a fact-finding process as opposed to an adversarial litigation process resulting in findings of legal liability. It is, therefore, difficult to strictly apply the three criteria from Okanagan/Little Sisters (No.2), which were formulated in a context of public interest funding for litigation.

[26] Of significance is that, in Caron, the Supreme Court of Canada reiterated that the discretionary exercise of the superior court’s inherent jurisdiction permits the Court to consider any relevant factors that arise on the facts, and to decline to make a public interest funding order even where all three criteria are satisfied: at para. 39. Above all, the test is whether or not the superior court is required to take action to avoid an injustice in derogation of the public interest. The satisfaction of all three criteria is, therefore, necessary but not sufficient for the making of a discretionary order for public interest funding: Okanagan at para. 41.

[27] Nevertheless, in Caron at paras. 38-39, the Supreme Court of Canada suggested that Okanagan and Little Sister No. 2 provide guidance to the general paradigm of public interest funding, and the three criteria are useful in deciding whether public funding should be ordered in a particular case. Those criteria are:

1. The party seeking interim costs genuinely cannot afford to pay for the litigation, and no other realistic option exists for bringing the issues to trial – in short, the litigation would be unable to proceed if the order were not made.

2. The claim to be adjudicated is prima facie meritorious; that is, the claim is at least of sufficient merit that it is contrary to the interests of justice for the opportunity to pursue the case to be forfeited just because the litigant lacks financial means.

3. The issues raised transcend the individual interests of the particular litigant, are of public importance, and have not been resolved in previous cases.

[28] I am not satisfied that the Applicants have met any of these criteria and that an order that Alberta fund the Applicants’ legal fees is necessary to avoid an injustice.

[29] With respect to the first Okanagan criterion, impecuniosity, I agree with the Respondent that the Applicants’ evidence in relation to financial inability is ambiguous and inconclusive. It appears to relate to attempts to retain counsel to pursue civil litigation against the Crown not the Fatality Inquiry.

[30] In Little Sisters (No. 2), the Court stated that the question is “whether the applicant has made the effort that is required to satisfy a court that all other funding options have been exhausted”: at para. 68. Although Velvet Martin provides evidence of a broad network of support, there is little if any evidence to show attempts at fundraising or obtaining financing to hire counsel.

< *a/ Extensive supportive evidence was submitted to the Court demonstrating that no Counsel was available to assist. Primarily, the reason cited by various Counsel is the fact that it is uneconomical to challenge Government. The Court concluded that Counsel would alter its stance in regards to a PFI vs. civil litigation scenario, however, that was not true in my experience trying to secure Counsel. In addition, being forced to take on the role of a professional, my time was consumed with preparations for the PFI, rendering ability to re-seek Counsel and fund-raise full-time endeavors in conflict with the position.
b/ None-the-less, attempts were made to achieve financial assistance and shown the Court: Online fundraisers were initiated and friends also made attempts to assist . i.e. A Martial Arts Studio held an event where patrons could participate in challenges to raise money. While intent was grand, funds achieved, however, were minimal and insufficient to pay the costs of hiring professional Counsel. >

[31] Moreover, this criterion requires that no other realistic option exists for bringing the issues to trial such that the litigation would be unable to proceed without the order sought.In the circumstances of the Fatality Inquiry, it is not clear that counsel is necessary to avoid an injustice. The Fatality Inquiry will continue whether or not the order sought by the Applicants is granted.

[32] While it is understandable why the Applicants would want to have the assistance of legal counsel, she has actively participated in the Fatality Inquiry on a daily basis to date. Inquiry counsel has been appointed, and he has broad powers over the presentation of evidence, arguments, and submissions: Act, s. 35. There appears to be no restriction on the ability of inquiry counsel to assist or advise the Applicant, Velvet Martin, or other participants in bringing issues to the Fatality Inquiry.

[33] With respect to the second Okanagan criterion, a meritorious claim, the Applicants cannot be said to be asserting or defending a “claim” in the context of a fatality inquiry. Rather, the Applicant, Velvet Martin, has chosen to participate in a fact-finding inquiry which shall not contain findings of legal responsibility or conclusions of law.

[34] The Applicants’ position is that publicly-funded counsel is necessary at the Fatality Inquiry to protect and represent the interests of the deceased and of all children in the care of the government of Alberta in order to achieve the objective of the Fatality Inquiry. Yet, the fundamental and statutorily-mandated purpose of the Fatality Inquiry is to provide a written report in relation to the death of Samantha Martin.

[35] Section 53 of the Act sets out the result of the inquiry:

53(1) At the conclusion of the public fatality inquiry, the judge shall make a written report to the Minister that shall contain findings as to the following:

(a) the identity of the deceased;
(b) the date, time and place of death;
(c) the circumstances under which the death occurred;
(d) the cause of death;
(e) the manner of death.

(2) A report under subsection (1) may contain recommendations as to the prevention of similar deaths.

(3) The findings of the judge shall not contain any findings of legal responsibility or any conclusion of law.

[36] The focus of the Fatality Inquiry is on making factual findings on the identity of the deceased, the date, time and place of death, and the circumstances, cause and manner of death. The focus may also be on making recommendations as to the prevention of similar deaths if such recommendations are appropriate in the particular case. Although, the decision as to whether or not to make such recommendations in this particular case will be determined by the Fatality Inquiry judge, it is clear that the Fatality Inquiry process already recognizes the interests sought to be protected by the Applicants through publicly-funded legal counsel.

[37] With respect to the third Okanagan criterion, the Fatality Inquiry is clearly of public importance. However, the Applicants have not demonstrated “special circumstances sufficient to satisfy the court that this case fall within the narrow class of cases where this extraordinary exercise of its powers is appropriate”: Okanagan at para. 36; Caron at para. 6. The Fatality Inquiry will continue and conclude with the report of the inquiry judge, even without the order sought. The Applicant, Velvet Martin, will able to continue to participate as an interested party. I am not satisfied that a failure to grant the order sought will deny the Applicants the opportunity of having issues of public interest resolved by the fatality inquiry process.

[38] As the Applicants have not satisfied any of the Okanagan criteria, this is not an appropriate case in which this Court should exercise its narrow discretion to make an order for publicly-funded legal counsel for the Applicants.It is not essential to avoid an injustice in derogation of the public interest that this Court grant the order sought by the Applicants.

[39] Finally, in the context of a fatality inquiry, it is relevant to the issue of injustice that Applicants are not at risk of any incrimination by participating in the inquiry. The Act prevents the use of evidence given at the inquiry against the witness in any trial while the proceeding (other than for perjury) and obligates the inquiry judge to inform a witness that is about to give incriminating evidence of his or her rights under s. 5 of the Canada Evidence Act: Act, ss. 48,50. This further supports my conclusion that no injustice will be suffered if the Applicants are not granted an order for publicly-funded legal counsel.

VI. Conclusion

[40] In conclusion, I am not satisfied that the Applicants have demonstrated either that the tribunal is powerless to act or that it is essential to avoid an injustice that action be taken.

[41] The application for an Order requiring Alberta be ordered to pay the legal fees of Velvet Martin or the legal fees of her daughter Samantha Martin’s estate to assist Velvet Martin in participating in the Fatality Inquiry is, therefore, dismissed.

< * In other terms, Justice dismissed. Demonstrating sentiments of an Officer who confided, “Canada is a Legal System, not a Judicial System.” >

Heard on the 21st day of September, 2011.
Dated at the City of Edmonton, Alberta this 17th day of October, 2011.

John J. Gill
J.C.Q.B.A.

Appearances:

Robert P. Lee
Robert P. Lee Professional Corp.
for the Applicants

Doreen Mueller
Alberta Justice
for the Respondent

Young, Autistic and Locked Away

December 12, 2018

Young, Autistic and Locked Away

Eden Norris gets a kiss from his mother, Deborah Evans, during a brief visit in December 2017. Norris, who has autism and learning disabilities, has spent the last three years in a locked institution nearly 200 miles from the family’s West London home. (Perry Collins)

Truthdig is proud to present this article as part of its Global Voices: Truthdig Women Reporting, a series from a network of female correspondents around the world who are dedicated to pursuing truth within their countries and elsewhere.

“Eden has been locked away and left to rot,” says Perry Collins, a London cab driver. Collins is speaking of Eden Norris, his 26-year-old stepson, who has autism and learning disabilities and lives in a locked, privately owned facility nearly 200 miles from the family’s West London home.

Norris has spent nearly nine years in institutions, with only brief periods of living outside. His mother, Deborah Evans, is also disabled, due to incapacitating anxiety and panic attacks. The family is only able to visit Norris every two weeks because it’s a 13-hour round trip to his facility in Norwich.

“He’s entitled to have a family life,” Collins says. “It’s his human right, but instead he’s lost his life, and we miss him.”

Norris was voluntarily institutionalized when he experienced a crisis at the age of 17, which was worsened by lack of adequate professional support. He became extremely anxious, needing care his family could not provide at the time. This is not unusual—many young people falter when they transition from child-centered support in the formal education system into a patchier and cash-strapped system of support for disabled adults.

This transition period is when many—like Norris—are most at risk of being institutionalized. Inside poorly managed and underfunded facilities, many residents become distressed and act in challenging ways. The staff, who may be poorly paid and trained, often lack the skills to help them. Instead of receiving the support they need, patients are routinely restrained, overmedicated and segregated in cells, which they cannot leave for days, even months.

Although patients may have entered institutions voluntarily, they’re often not able to leave voluntarily. In Norris’ case, he was kept in long-term segregation in his first institution, where he had what his mother describes as “some meltdowns.” The staff, in reaction, pressed charges and applied successfully for a section 37 of the Mental Health Act, which “sections” a person, or allows involuntary institutionalization for an undefined period of time.

Norris has spent the past three years at the Assessment and Treatment Unit (ATU) at Cawston Park Hospital in Norwich. His parents say he is often kept sedated and that when he arrived, he was isolated and fed through a hatch. They also say that because of the medication he is given, he has chest pains and usually sleeps about 14 hours a day. Since entering institutions, his weight has soared from 210 to more than 300 pounds. (Andrew Gordon, director of communications at Cawston Park Hospital, says he cannot comment on individual cases.)

After an intense effort by his family, Norris was released briefly in December 2017 to live in a supported-living residence in London. Norris’ parents feel he didn’t receive adequate support and continuity of care in that residence, and although they provided support themselves, the placement broke down when Norris’ anxiety returned. He was returned to the hospital after a few weeks.

If their children have been sectioned, parents aren’t allowed to remove them from institutions without the approval of a psychiatrist or other responsible clinician. If patients do manage to leave, many are so traumatized by their experiences in a facility that they have more crises outside, and they end up back in inpatient settings. Some parents who have expressed concern about institutional conditions have been threatened with court orders.

Jeremy (whose full name is being withheld for privacy and family reasons) has highlighted the case of his daughter Beth on social media and the BBC. Beth, who has autism, has been held in seclusion in a facility for 23 months. The staff deemed her such a risk that, despite a lack of corroborative evidence, she was fed through a hatch. She is currently sectioned under the Mental Health Act. Jeremy’s local council, or governing authority, threatened him with a gag order when he tried to publicize her plight, but the council later backed down.

After a public outcry, Jeremy met with Matt Hancock, the U.K. health secretary. Beth’s case is being reviewed, and the family is campaigning to move her nearer to home and out of seclusion permanently.

Critics, including disabled people and their families, warn that while things may change for individuals whose cases reach the media, the system remains the same. Hancock has asked for a review of the seclusion system for people with disabilities, but many Britons—partly because previous initiatives have failed—are pessimistic that conditions will change radically.

Failure to Transform Care

The situation wasn’t supposed to be this way for patients and their families. After an outcry following a BBC investigation of abuse at the privately run Winterbourne View care home in 2011, the government promised to move people out of expensive ATUs where some people had been held for years. The cost of each placement was heavy then—more than $200,000 per year. It’s now even more expensive.

British citizens can access health care free of charge through the National Health Service (NHS). It runs and pays for ATUs, but local councils pay for care in the community. Critics say this payment system is one reason people spend so long in institutions. These critics feel that local councils, which are often strapped for money, hesitate to pay for community-based care when they can shift the costs to the NHS instead.

As the government slowly developed its ATU closure policy, other abuse scandals and tragedies followed, including the preventable death of 18-year-old Connor Sparrowhawk (known as LB), who drowned in a bath at an NHS facility in Oxfordshire in 2013. The Justice for LB campaign fueled demands for action and accountability regarding the treatment of people with disabilities in institutions.

In October 2015, the NHS and local government leaders published a $58 million plan, known as Building the Right Support. Under the plan, March 2019 was to be the closure date of England’s last NHS hospital for people with learning disabilities. It was also the date nearly half the 2,600 beds in ATUs would be eliminated. The government pledged to invest more money into community living instead.

The community living model covers a range of options including supported  environments in which disabled people live together with professional help; independent living in which disabled people can choose their own care providers such as personal assistants; and living without support in any kind of accommodation. This model tends to be less expensive than institutionalization, and it promotes inclusion in the community.

But the ATU closure process has stalled. Throughout the U.K., an estimated 3,000 disabled children and adults still are housed in ATUs and similar inpatient settings. The facilities are designed for short emergency stays, but many people remain for long periods. NHS data shows that people with a learning disability or autism who are sent to such units stay for an average of 5½ years.

A recent news investigation found that 40 disabled patients have died in ATUs in just 2½ years. Nine were under 35 years old. The institutions in which they died were scheduled for closure years ago.

A significant worry is caused by the fact that the number of children and young people in the system is increasing. A study by the Challenging Behaviour Foundation shows the number of children with a learning disability or autism in inpatient units grew from 110 in March 2015 to 230 in April 2018.

Steve Broach is a lawyer who works with U.K. families to challenge poor treatment of their loved ones. “We are going backward toward institutionalization,” he says. “The role of services is to get people to live a full life, but that isn’t happening.”

Families and specialists say the system is failing from childhood on. Younger children are also at risk of restraints, seclusion and physical harm in both special and mainstream educational settings. Elly Chapple, whose daughter was restrained and injured in an educational setting, is in touch with families experiencing similar issues. Many of those families believe the situation is at a crisis point in schools and ATUs. “There are hundreds of cases like Beth,” Chapple says. “She is the tip of the iceberg.”

Chapple is determined to see change happen. “Disability is the last taboo to break, and we are fighting for our place, and our children are still suffering,” she says. “Why else, in 2018, would we have children in cells?”

Lancaster University professor Chris Hatton charts the pathway that disabled young people follow into closed institutions. “So you have children who have had little support, getting shunted out of mainstream education and out of sight of society, despite the policy noise about early intervention,” says Hatton, who specializes in public health and disability. “And then these invisible kids have a crisis … (and then there is) a panic response, which is when the institutions appear on the scene, and you get a huge rise in young people entering inpatient facilities.”

Simone Aspis, who has learning disabilities, is a “self-advocate” who challenges the institutional role and supports patients who want to leave locked facilities. “The route into these institutions for young people with autism and learning disabilities is too easy,” Aspis says. She explains that the proof used to section patients is often based on behavior that is different and deviates from the norm, rather than on aggressive behavior. “A lot of young people … don’t get the support they need, their behavior gets difficult—and then they get sectioned,” she says.

Policy Versus Reality in the U.K. and Europe

As in the U.K., the concept of independent living for disabled people has become embedded in policy in the European Union and farther afield, but the reality of institutionalization remains dire. In the U.K., community living initiatives have freed many disabled people, leaving those with learning disabilities and autism at risk of being locked away. However, in many EU countries, people with a range of conditions, including sensory and physical disabilities, remain in institutions.

More than a decade ago, the EU committed member countries to a deinstitutionalizationinitiative based on “shared European values of human dignity, equality and the respect for human rights.” The goal of the initiative was to transition disabled individuals from residential institutions to community-based care.

In 2014, the EU limited European Structural and Investment Funds to some member states, unless those states moved more residents into community living. Those member states—mainly in Eastern Europe but also including Greece—were forbidden from using two key EU funding pots to build or renovate institutions. Billions of euroswere spent on the initiative, but success was limited.

Human Rights Watch recently reported that, in the name of care and treatment, children with disabilities remain locked away, neglected and abused, restrained and malnourished throughout Europe. Central and Eastern Europe have the largest proportion of children in institutions in the world.

The rate of placement in formal care in these regions is alarming. In Hungary, large facilities with poor human rights records are scheduled for closure, but the government plans to build smaller facilities rather than move residents into the community. Human rights groups have protested this, but the European Commission has thus far refused to suspend funding.

In Greece, the children’s charity Lumosreports that children, many of whom have disabilities, are still being physically restrained and abused in institutions, with some even being caged in beds.

In Belgium, more than 5,000 disabled adults and children are being warehoused in poor conditions on behalf of the French state. French parents complain that their children are sent to Belgium and they are not offered alternative placements.

Even the policy of transitioning institutional residents to community-based care is in danger. As EU budget negotiations currently take place, proposed rules no longer make it a priority to promote the transition for people with disabilities. This means that building or renovating institutional care facilities could once again be eligible for funding, which would work against community placements for disabled people.

Organizations that campaign for the end to institutions in Europe are pushing back before the budget is set. European Structural and Investment Funds play a pivotal role in motivating and supporting the transition from institutional care to community-based living. Advocates of community living are horrified that the clock may be turned back and money earmarked for social inclusion may be used to segregate people with disabilities.

Profit Motive

In the U.K., an additional factor contributes to keeping institutions open: the profit motive.

While the British government runs many institutions via the National Health Service, some large corporations—including two U.S. health care companies—also run private-sector institutions in the U.K., and those facilities need clients.

It isn’t in the interest of those companies to promote community living, according to Alicia Wood, head of public affairs for Dimensions, a nonprofit that advocates community living for people with learning disabilities, autism and complex needs. “Every time there is a tragedy in a long-stay hospital, everyone wrings their hands,” Wood says. “Tackling the profit motive is an essential part of the changes that must happen to fix our broken system.”

Experts believe the U.K. government’s target to reduce the numbers of disabled people in inpatient settings by March of 2019 will almost certainly not be met. “Things may well change for individuals, but I don’t know if it has any bigger effect; instead there is an attempt to manage away the story,” Hatton says. “Bigger forces are swamping any attempt to do anything but tweak. Brexit has consumed everything at the moment. There is interest in scandal reduction, but not policy change.”

Aspis questions why Britain is using its resources on segregation rather than inclusion. “We are (one of the richest countries) in the world,” she says. “We can choose whether or not to lock people up.”

Eden Norris, for his part, has spent more than one-third of his life in locked institutions, despite having committed no crime. Perry Collins says the family has been told Norris may be able to leave soon to live in a homier setting nearer his parents. But that would be on a trial basis; because he has been sectioned, he can be recalled and locked away again.

Collins just wants his stepson to be reunited with the family in West London in time for Christmas. Collins says: “Every time we visit, he says ‘Mummy, I just want to come home. But they don’t listen to me.’ ”