Judge raises questions about Alberta girl’s death (2012)

February 27, 2020

2012 Judge raises questions about Alberta girl’s death in fatality inquiry

BY JACKIE L. LARSON
ORIGINALLY PUBLISHED: NOV 2, 2012

When 13-year-old Samantha Martin died, there were more questions than answers.

But a new report that says she died from natural causes brings recommendations from a judge to make sure tragedy isn’t repeated in Alberta.

A rare genetic disorder called Tetrasomy 18p left Samantha mentally and physically disabled, but her death after a life spent at a foster home touted as the answer for her grieving parents raised questions about deficiencies in the Children’s Services system. That’s according to Judge Marilena Carminati, the provincial court judge conducting the public fatality inquiry for Justice Minister Jonathan Denis.

Carminati found that while there was no link between numerous fractures, bruises and low growth and weight Samantha suffered, there wasn’t any link to her genetic condition either. Carminati said she didn’t find expert evidence that Samantha’s genetic condition caused her death.

But the judge also found Children’s Services didn’t connect the dots on Samantha’s health issues, even though complaints had been lodged by school officials. A social worker appeared to be “ill-informed” about the girl’s needs, she said.

There was a three-year gap between doctors visits in the girl’s medical history, and medical procedures recommended by a physician – including an EEG to check for seizures – were not followed up, Carminati said.

Her worker testified that although she was required to visit the girl every three months, over a two-year stretch she saw Samantha just three times.

Carminati’s report urges changes at Children’s Services.

The agency should ensure caseworkers who work with a foster child have accurate and up to date information from a reliable medical source about the child’s disability and the impact of that disability on the health, weight and fragility of the child.

“This needs to be well understood in order for the worker to make informed assessments about how the child is doing in care, especially in the case of a nonverbal child who cannot communicate concerns with the child’s worker,” Carminati wrote.

The agency’s policies should be enhanced to ensure children are actually receiving their annual medical checkups, including a diary system so the issue isn’t overlooked.

Once a recommendation is made from a school or some other reliable assessor, a doctor should examine the child and follow-up should by done by the agency, “including required entry by the Children’s Services child care worker or other support staff … into a diary system,” she wrote.

Caseworkers should have a “reasonable” case load so they have time to document and follow up on the child’s medical needs, Carminati found.

Human Services Minister Dave Hancock said lessons learned from the brief life of Samantha Martin have included a much stronger provincial support system for families with children with disabilities.

A quality review council and new structures in place for children with disabilities focus on communication where there may have once been failures to connect the dots, he said.

Hancock said he’s confident many problems with the system have been righted since Samantha’s death.

“We’re working more collaboratively than we did in the past, so the child is not on their own,” he said.

Secretive and often overzealous care agencies protect children largely at parents’ expense (2014)

February 13, 2020

Secretive and often overzealous care agencies protect children largely at parents’ expense

5efd81736a6759eef5ba756d1f1c7de5.jpg

Sarah Boesveld

December 12, 2014 11:33 PM EST

Last Updated January 24, 2015 4:29 PM EST

Isaiah Wilson acts out — his hyperactivity, in the form of hitting, punching and screaming, a symptom of a rare chromosome deletion called 8P syndrome. Combined with ADHD and autism, the 10-year-old has had a tough life but, thankfully, a loving family.

[np_storybar title=”Series: Canada’s child-welfare crisis” link=””]

Sometime in the new year an inquest is expected to probe the hideous death of Katelynn Sampson, a seven-year-old Toronto girl found dead, injured from head-to-toe while in the custody of legal guardians, just as 2014 began with the inquiry report into the death of Phoenix Sinclair, a five-year-old Winnipeg girl who died after she was returned to her abusive mother, and 2013 closed with sickening testimony at the inquest for Jeffrey Baldwin, a five-year-old Toronto boy placed in the care of his grandparents and dying a torturous death.

It is a grim cycle.

Three years ago, Tara and Tyrone Wilson brought their son to a downtown Toronto hospital where he was kept for observation. The doctor, a psychiatrist, recommended the Wilsons consider placing Isaiah in a residential home, which would give him more structure. The Catholic Children’s Aid Society would help them through it. They were reassured child welfare involvement would be voluntary.

After mulling this for six months, the Wilsons finally agreed, feeling it would be in Isaiah’s best interests.

Their son, then eight, went to spend his weekdays at a residential facility in nearby Pickering. After much improvement in a month, he came home. A CCAS worker, whom Ms. Wilson said she “treated like family,” continued to visit the Wilsons on a monthly basis.

One day, the worker announced the family’s file would be closed. But then, a week later, she returned to tell the Wilsons that not only would their file remain open, the CCAS was apprehending Isaiah and his parents would have to go to court to get him back. The reason? Isaiah wasn’t making adequate progress at home.

“I was sick to death, in tears, devastated,” Ms. Wilson said. “I thought, ‘This doesn’t make sense.’”

‘I was sick to death, in tears, devastated’

Ms. Wilson convinced the CCAS to keep the file open and have Isaiah remain at home, but her trust in the agency was shattered. So she started writing letters: First to the Ontario Ministry of Children and Youth Services, then the Child and Family Services Review Board; then the Ontario Child and Youth Advocate and the Ombudsman of Ontario, even though the ombudsman has no jurisdiction over child protection in the province.

“I got a lot of responses,” she said. “But the one that made me seek further legal advice was from the ombudsman.”

The ombudsman’s office asked the CCAS for an explanation — and the one it received came as a shock to Ms. Wilson.

“They told me ‘Tara, they’ve come back saying the reason why they’re taking child away is they do have child protection concerns,’”— concerns they could only trace back to one domestic call to police in which no charges were laid, said Ms. Wilson, who deemed the incident from years ago “silly.” Why, if this was such a concern, was it never mentioned? Why was Ms. Wilson previously allowed to voluntarily take Isaiah out of the treatment home and back into her care? Why would the CCAS worker insist, when she sat in on school meetings, that she was merely there to support the family?

—————

Child protection agencies have sweeping powers in Canada —powers that, in many aspects, span wider than police. And just as sweeping in many jurisdictions is the privacy under which child protection agencies and government ministries operate. It’s a realm where freedom of information laws do not apply. It’s a space of many secrets.

As last year’s Postmedia investigation into deaths in Alberta foster care revealed, a provincial law will not allow parents of children who’ve died in care to speak their names. Ontario has just given investigative powers into such cases to an independent body, but it doesn’t cover parental complaints. While governments insist the wide-sweeping privacy is to protect the best interests of the child, a growing number of families and critics say it is really a way for governments to protect themselves. Parents who feel child protection agencies overstepped their bounds have no place to go but down government-supported roads they feel are not impartial or accountable enough.

“For such a long time, the government has used privacy as a rationale for secrecy and the two are not the same thing,” said Rachel Notley, leader of Alberta’s NDP and former critic of the province’s Ministry of Human Services.

In all other provinces and in the Yukon territory, either an ombudsman or a child advocate hears complaints from parents and has the power to investigate (after a decade of lobbying, Nunavut appointed its first child and youth representative in January).

John Lucas/Postmedia

Ontario has long been the holdout — the only province in which child protection is not administered by the government directly, but by 51 arm’s length agencies. That has changed this month in the form of Bill 8 — a sweeping accountability measure introduced by the government in response to previous scandals. The bill, which passed into law Tuesday, gives investigative powers to the Ontario Child and Youth Advocate. It should be a massive win, but critics say it doesn’t help parents in the least.

“It’s just smoke in mirrors,” said an Ontario activist spurned by the province’s Children’s Aid Societies, alleging they’ve been lied to by workers about their motivations for involvement, that their children have been hurt in care, that their files aren’t being dealt with in a timely manner and that critical information is withheld.

When he first saw the title of Bill 8 — “An Act to promote public sector and MPP accountability and transparency” — he thought ‘Wow, that sounds fantastic — accountability may be truly on the horizon.’” But the expanded oversight does not include access to freedom of information requests, it doesn’t give the Advocate power to drop in on a foster home unannounced, it does not allow him to discover abuse in care. It doesn’t go far enough, he said.

“Kids are still going to die. Kids are still going to be abused in care. There’s going to be no way to find the systemic problems that are leading to these issues and why they’re not getting resolved…Families are going to continue to be torn apart.”

Even academics who study the system in Canada share worries about what’s often considered overzealous privacy.

“Sometimes concerns about lack of transparency are quite legitimate. There’s a tendency to not be as accountable to the community,” said Brad McKenzie, a professor of social work at the University of Manitoba.

The secretive nature may also breed distrust; as stories from the parents in online social networks lay bare, parents feel like the enemy in an adversarial relationship.

“If someone took your kids, you’d be angry too,” said Mary Ballantyne, the executive director of the Ontario Association of Children’s Aid Societies. The society’s job, she stressed, is to protect the child, and while they try to do that with the cooperation of the parents, that is not always possible.

—————

Since assuming office in 2005, Ontario’s ombudsman André Marin has pushed for child protection agencies to come under his umbrella. His office keeps a tally of complaints it received but has no mandate to pursue. Last year, he received 536 — far more than the pervious year’s tally of 472. Between April and November 2014, 290 complaints have filtered in.

“This is serious stuff: Failure to investigate abuse allegations, denial of access to children in care. These people have no place to go,” he told the National Post. “The Children’s Aid Society is funded to the tune of $1.4 billion. That’s a lot of public funds.”

Aaron Vincent Elkaim/CP

Mr. Marin has said he will support Ontario Child and Youth Advocate Irwin Elman in his new investigative role. It is unclear whether he will continue to accept complaints from parents. Mr. Elman won’t. His mandate is, and always has been, speaking up for children.

The Child and Family Services Board — a recent creation designed to address concerns in Ontario — cannot investigate a matter that’s before the courts, and acts as a bureaucratic mediator that ensures protocol was followed. The auditor general looks out for the money. The coroner takes complaints about child deaths, but there is no child death review system in Ontario. Late last month, high-profile pediatrician and child abuse expert Dr. Lionel Dibden resigned from Alberta’s quasi-independent committee to improve the province’s internal death review system, saying the council has been “unable to fulfill its mandate.”

In late November, the Minister for Child and Youth Services rejected Mr. Elman’s plea to extend his powers to protect all the children under his mandate, provide whistleblower protection and give him access to information, saying it would create too much of a ‘document process.’”

“How can I explain to a child or youth who bravely comes forward with a concern about their safety or care that I’m unable to act because the government is concerned about paperwork?” he asked.

—————

Change is occurring in Alberta: Late last month, the province “lifted the veil of secrecy” over the deaths of children in care, promising to make publicly available key details of all deaths. The results come after a damning six-year-long Calgary Herald/Edmonton Journalreport on child deaths. Over the past 15 years in Alberta 767 children have died in care.

Alberta mother Velvet Martin is one of two parents legally allowed to speak about her daughter. Samantha, apprehended due to a rare chromosome disorder (not unlike Isaiah) that authorities felt meant her parents couldn’t provide adequate care, suffered multiple injuries and neglect in her foster home and died as a result in 2006 at age 13.

“The entire premise is to protect the child and to protect the family of the child. This is how I was successful in arguing my case in lifting the ban: ‘Well my child doesn’t require protection any longer. She was failed. She is dead,’ ” Ms. Martin said.

This Dec. 3 marked eight years since Samantha passed away in care. Ms. Martin, champion of Samantha’s Law and spokesperson of the organization Protecting Canadian Children, received a human rights award last week for her activism — an award she believes is “owed” to her daughter. “I’m afraid the true picture of what actually exists remains grim,” she said.

‘Well my child doesn’t require protection any longer. She was failed. She is dead’

In the case of Isaiah and his family, Ms. Wilson feels the CCAS unjustly threatened to take her child from a very good home with loving parents.

She quit her job at the Royal Bank to stay home with him full time and ensure he had as much support as he could get at home.

She ended up spending $25,000 on a lawyer who finally convinced the CCAS to close her son’s file. Her lawyer, Gene Colman, is convinced the file was kept open to ensure the organization got proper funding.

The CCAS declined to comment on Ms. Wilson’s case directly, citing privacy legislation, but said the agency has an informal and formal complaints process and tries its best to resolve complaints with the family. Louise Galego, child protection manager of the Catholic Children’s Aid Society of Toronto, said it is odd that a worker would appear to be closing a file one week and then return the next with an apprehension order.

Ms. Wilson just wants her story told: “I’m not going to smack anybody’s hands or get anybody in trouble. Whatever happened, happened. But someone needs to be held accountable.”

National Post

• Email: sboesveld@nationalpost.com  

40% to 80% of Parents in U.S. with Intellectual Disabilities Lose Custody of their Children

January 28, 2020

40% to 80% of Parents in U.S. with Intellectual Disabilities Lose Custody of their Children

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by Robyn Powell
Rewire News

Excerpts:

Last week, the U.S. Department of Health and Human Services (HHS) Office for Civil Rights (OCR) announced an agreement with the state of Oregon to develop a system to ensure the state’s child welfare agency does not discriminate against parents with disabilities, a move that could benefit one in ten parents in the United States.

The agreement stems from a case involving Amy Fabbrini and Eric Ziegler. Fabbrini and Zieglerendured a five-year battle with the state of Oregon to regain custody of their two sons, who were both taken into foster care after their respective births following concern that Fabbrini and Ziegler would be unable to care for them.

No abuse was alleged against Fabbrini and Ziegler, who say their below-average scores on state-sanctioned IQ tests are why Oregon held the children in foster care until their court-ordered releases in late 2017 and early 2018.

Fabbrini and Ziegler’s case is not unique. At least 40 percent to 80 percent of parents in the United States with intellectual disabilities will lose custody of their children, according to a 2012 report from the National Council on Disability, on which I was the primary author.

This discrimination is not only harmful to families—it is also unlawful. Indeed, both Section 504 of the Rehabilitation Act and the Americans with Disabilities Act (ADA) prohibit child welfare agencies and courts from discriminating against disabled parents.

These federal laws also require child welfare agencies and courts to provide reasonable modifications in policies, programs, and procedures to ensure disabled parents are offered an equal opportunity. For example, Deaf parents must be provided sign language interpreters, and parents with intellectual disabilities should receive individualized services based on the family’s needs.

Yet, nearly 50 years since the Rehabilitation Act was passed and 30 years since the ADA became law, discrimination continues to persist. As a result, families are being torn apart.

Such discrimination is a long-standing issue in U.S. history, rooted in eugenics practices like intelligence tests and other standards that, historically, have resulted in children being removed from families and forced sterilization of those with—or those perceived to have—disabilities.

Roughly two-thirds of state child welfare laws still allow for a parent’s disability to be considered for the purposes of terminating parental rights, according to the National Council on Disability. Tellingly, researchers from the University of Minnesota found that nationally, 19 percent of children in foster care had been removed from their homes at least in part because they had a disabled parent. That same study found parents with disabilities had 22 percent higher odds of having their parental rights terminated, compared to other parents. And, a recent study found that parents with psychiatric disabilities were eight times more likely than other parents to have involvement with the child welfare system.

The belief that disabled people are unfit parents dates back to the eugenics movement in the early 20th century, when people with disabilities and others who were deemed “unfit to procreate” were forcibly sterilized. This barbaric treatment even gained the blessing of the U.S. Supreme Court in the 1927 Buck v. Bell case, which held it was constitutional to sterilize people with disabilities forcibly. This alarming decision led to more than 30 states enacting laws that permitted involuntary sterilization, and an estimated 70,000 Americans, many of whom had disabilities, sterilized against their wishes.

But studies do not indicate that parents with disabilities are more likely than nondisabled parents to abuse or neglect their children. In fact, research has consistently found that most disabled parents and their families fare quite well when provided the chance. Studies have shown that a lower IQ has nothing to do with one’s fitness as a parent. IQ scores themselves are rooted in flawed methodology and have been used to justify racist and eugenics practices. Further, some scholars contend that there are ways in which children actually benefit from having a disabled parent, such as exhibiting increased empathy.

Thus, the overrepresentation of parents with disabilities within the child welfare system is most often based on prejudice rather than actual harm. But the federal government largely has been silent about the rights of parents with disabilities, which makes OCR’s recent action notable—and long overdue.

 

YWCA Women of Distinction Award recipients shine in Edmonton (2015)

January 26, 2020

YWCA Women of Distinction Award recipients shine in Edmonton

https://edmontonsun.com/2015/05/29/ywca-women-of-distinction-award-recipients-shine-in-edmonton/wcm/34c4eff0-5d55-40e3-bb21-ca02e87bea55/amp

This year’s YWCA Women of Distinction Award recipients include a teacher, a bishop, an athletic trainer and several others with lengthy resumes.

More than 600 guests packed a hall at the Edmonton Expo Centre Thursday for the 33rd annual ceremony, which celebrated 52 exceptional Edmonton women who have had a “significant impact in our city and society.”

The nominees were whittled down to eight winners, including former Edmonton Examiner columnist Rayanne Forbes, who took home the Turning Point award, awarded for overcoming adverse circumstances and drawing from her experience to inspire strength and success in others.

Forbes has Graves Disease and has thrived through multiple surgeries, dental repairs, chronic pain and bullying to help others living with the condition by founding the Graves Disease Foundation of Edmonton.

As a columnist, she featured local charities, non-profits and animal rescue agencies.

The 26-year-old works full-time at Youth Empowerment and Support Services (YESS), and was recently featured in the Edmonton Sun.

Robyne Garton, who won the entrepreneur award, is a mom of four who runs two successful businesses.

Garton started an all-female roofing company called Pink Belts Roofing that works to advance women in the trades.

Carla Cuglietta, who was honoured with the volunteer award, is a teacher who has volunteered in Africa and Asia, founded Youth Leadership Summit WE Stand, and founded a non-profit in India called Canadian Water Works that gets clean drinking water to more than 1,200 homes and schools.

Other winners were Bishop Jane Alexander (Advocate), Pardee Badyal (Arts and Culture), Marjorie Carter (Educator), Steffany Hanlen (Trailblazer), and Grade 11 student Lauren White (Young Woman of Distinction).

kevin.maimann@sunmedia.ca

Learning disabilities care ‘far from home’ 2018

January 6, 2020

‪2018 BBC News – Learning disabilities care ‘far from home’

https://www.bbc.com/news/uk-scotland-45666103‬

Learning disabilities care ‘far from home’

By Lucy Adams
BBC Scotland correspondent
2 October 2018

Tracey wants her disabled son to be released from Carstairs
New figures obtained by BBC Scotland show that people with learning disabilities and autism are still being forced to live far from their families.
This is despite a Scottish government pledge five years ago to end the practice.
The BBC also found the number of people with learning disabilities unable to leave hospital units was increasing.
The Scottish government said work had been done to identify the gaps and it was committed to addressing the issue.
In 2013, the government said that “by 2018 people with learning disabilities and autism and complex care needs who are currently in facilities outwith Scotland should be supported to live nearer their family in Scotland”.

Dr Anne MacDonald has studied the issue for the Scottish government
However, data obtained by the BBC showed there were 79 people from Scotland still in care homes and hospitals in England and Wales.
The figures come from a study carried out by Dr Anne MacDonald, who has been seconded in to the Scottish government to assess the numbers of people who are still trapped in hospital units and, separately, those stuck a long way from family.

Across the UK the policy direction is to move everyone with learning disabilities into community provision close to families or to being supported in their own homes.
Good examples
But the study found that more than 400 people were still in care homes and hospitals out of their local area, not through choice.
It said 109 of them needed to be brought home as a priority.
Dr MacDonald, project lead for the Keys to Life Project, told the BBC those in the 109 group were of particular concern.
She said: “I think it is absolutely clear that anybody with a learning disability can be in their local community and indeed should be.
“It is about getting these services right for individuals.”
Dr MacDonald said there were many good examples around the country of individuals with learning disabilities and complex care needs getting the right services close to home.
Positive methods
However, she said: “It is just unfortunate there are also lots of examples of where this isn’t happening and these are the ones we want to focus on going forward to see what we can do better to ensure all people are able to come back and live in their local communities and lead successful lives like the rest of us.”
Dr MacDonald also looked at the use of restraint for the 109 people requiring to be brought nearer their families.
She found 21% were subject to physical restraint, 11% subject to seclusion and 44% had their behaviour managed with sedatives.
The doctor said she was disappointed that more positive methods were not being used instead of restraint.
She said there was evidence that chemical restraint was ineffective and that physical restraint could cause long-term damage.
The policy to move people out of institutional care and closer to family follows decades of promises to get people with learning disabilities out of big hospital institutions and into the community but a number seem to have become stuck in the system.
Presentational grey line
‘He keeps telling us he wants to come home’
Louis Sainsbury

Louis was sent to a care facility in Hartlepool, a four-and-a-half hour drive away from his family
Kate Sainsbury says her son Louis was born perfect.
But when he was just a few days old he contracted meningitis.
Louis’s brain was damaged. As a result he has learning disabilities and his communication is impaired.
“Louis is tall and strong and charming,” she said.
He went to a residential school and went home at weekends but at the end of school he struggled and ended up in a hospital inpatient unit.
‘It’s desperate’
“After that it was really difficult getting a suitable placement for Louis,” Kate said.
And then earlier this year he lost his placement of six years.
“Last summer his biological father died and Louis understandably acted out. He was evicted from his placement and then we couldn’t find anywhere for him and the only place the social worker could find was in Hartlepool.
“For him the move was really frightening. It was a bereavement of everything he had known.
“It’s desperate. I drive down every fortnight but it takes four-and-a-half hours to get there.
“We’re looking to move Louis to a flat near us where he can be supported but it’s proven really hard. He can communicate and he just keeps telling us he wants to come home.”
Presentational grey line
Colin Mackay, chief executive of the Mental Welfare Commission (MWC), said there was great momentum in the 1980s and 1990s to get people out of institutional care but that it had stalled.
He said: “My worry now is that we have lost that sense of ambition and drive and that what is happening just now isn’t acceptable and we need to do something to resolve it.”
He told the BBC the numbers of people with learning disabilities stuck and unable to leave hospital units should be going down but was actually growing.
Colin Mackay from the Mental Welfare Commission said progress had stalled

Colin Mackay from the Mental Welfare Commission said momentum had stalled
A report the commission carried out in 2016 found there were about 58 people with learning disabilities and autism who had been assessed as ready to leave inpatient care but whose discharge has been delayed because of a lack of provision in the community – sometimes for months and even years.
A recent check found the figure had gone up to 78.
The Scottish government’s most recent Programme for Government does not mention the 2013 target but talks about reducing out-of-area placements from autumn 2018 onwards.
Inpatient care
It said Dr MacDonald’s work meant they were much better informed about the gaps in services and were able to address them.
Clare Haughey, the minister for mental health, said: “We are committed to considering how best to take forward work based on Dr MacDonald’s findings, including discussing this with Health and Social Care Partnerships in relation to the commissioning of local services, developing community services, transition planning and specialist skills.”
The BBC’s File on 4 radio programme has revealed the use of restraint in inpatient units in England has risen sharply and that thousands of people with learning disabilities are still trapped in institutional care across the UK.
Transforming Care – Is It Working? is on BBC Radio 4 at 8pm on Tuesday.

2012 Disabled parents fight to keep their newborn at home

December 12, 2019

Disabled parents fight to keep newborn at home

https://www.google.ca/amp/s/www.cbc.ca/amp/1.1185318

Social workers demand child receive 24-hour care

CBC News

Posted: May 01, 2012
Last Updated: May 02, 2012

Disabled parents fight for newborn

  • 8 years ago 2:25

A disabled couple are fighting to keep their newborn son, after social workers threatened to take the boy away unless he receives round-the-clock care from an ‘able-bodied attendant’  2:25

A disabled couple in Mississauga are fighting to keep their newborn son after social workers threatened to take the boy away unless he receives round-the-clock care from an “able-bodied attendant.”

Maricyl Palisoc and her partner, Charles Wilton, are the parents of a healthy month-old baby boy named William. Both parents have cerebral palsy, a disorder that limits their motor skills and slurs their speech, but has no effect on their cognitive abilities.

However, the Peel Children’s Aid Society is concerned about the couple’s ability to take care of their son and has expressed an intention to remove William from their home unless his parents secure 24-hour care from an able-bodied person.

The boy’s mother told CBC that she and her partner do not want to lose their son.

‘From what I’ve seen when I’ve been at the apartment … there’s really nothing that she’s unable to do.’ — Ryan Machete, Coalition for Persons with Disabilities, on Maricyl Palisoc’s abilities

“We know that we need help, but we know that we are the best thing for our boy right now,” Palisoc said. “We both wanted to be parents and now we are, and we don’t want do give anyone control of our family.”

So far, the couple have been receiving the type of help that the CAS has demanded, thanks to Ryan Machete, a program co-ordinator with the Coalition for Persons with Disabilities, which provided the funds for the services since William’s birth.

Machete said he’s not convinced it is necessary to spend $2,000 a week for a caregiver when Palisoc is able to change diapers, breastfeed and to “do the necessities” that come with caring for a newborn.

“From what I’ve seen when I’ve been at the apartment … there’s really nothing that she’s unable to do,” Machete told Metro Morning.

However, he said, it is possible matters will become more challenging as William grows, but that doesn’t mean she won’t be able to look after her son.

“I think that maybe when William grows up to be six years old and hurts his knee and needs his mom to pick him up, and he’s 60, 70 pounds, maybe that might be a little bit more difficult for her to do,” Machete said.

The Peel Children’s Aid Society says confidentiality rules prevent it from commenting on the case. The organization is due to meet with William’s parents on Friday to try to work out an arrangement.

With files from the CBC’s Philip Lee-Shanok and CBC Radio’s Metro Morning

 

Disabled couple thrilled they’ll be able to keep their baby

By CURTIS RUSH AND ANITA LI STAFF REPORTERS

Fri., May 4, 2012

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The proud parents of a 3-week-old baby boy learned Friday that they won’t lose their child to the Peel Children’s Aid Society after all.

“Yay!” Maricyl Palisoc, 34, yelled as she carried 9-pound William into her assisted living apartment unit in Mississauga with her fiancé, Charlie Wilton, 28. Both parents have cerebral palsy.

Charlie Wilton and Maricyl Palisoc, both of whom have cerebral palsy, with their son William. (CURTIS RUSH / TORONTO STAR)

They had feared they would lose the baby, but a family conference meeting was held Friday with Peel CAS and the parents showed that they can address the safety and well-being of their child.

They have a personal care worker with them 24 hours a day and grandparents willing to help.

It’s been an emotional three weeks after their son was born by C-section at Mount Sinai Hospital.

Cerebral palsy is a muscular disability marked by slurred speech and physical impairment. Their cognitive abilities are not impaired. The couple said they can do everything able-bodied parents can do. Wilton changes diapers and Palisoc breastfeeds.

Palisoc, who works part-time as a cleaner, does not need a walker.

Wilton relies on a walker to get around and says he won’t pick up the child, but he can hold him just fine. He said he wants to be a stay-at-home dad.

The baby has a clean bill of health.

The pair met 14 years ago and the two have been seeing each other for the past six years. They have been engaged for a year.

They have been trying for the past three years to have a child.

They conceived the child in the conventional way.

“Even disabled people can have sex,” Wilton said with a laugh.

Wilton shrugged off concerns that because he and Palisoc have slurred speech that the child won’t be able to communicate with them as he grows up.

“It’s just like learning a second language, like Spanish. I just have to be patient,” Wilton said.

Wilton is not without worry, however.

He was adopted and spent many years going from group home to group home. He is worried that someday he will lose his child to foster care.

“I just want to be a good father,” he said.

Linda Soulliere, executive director of the Coalition for Persons with Disabilities, said her organization worked out a support plan with AbleLiving, a group that provides assistance to adults with disabilities, and submitted it to the CAS for approval.

The plan involves support workers providing enhanced or essential care for the parents and child. They are on-call 24 hours a day, and plan to schedule regular visits with the family.

Soulliere said she is confident Palisoc and Wilton are competent caregivers.

“Maricyl and Charlie are very strong and independent people, and I’m sure that they will be able to learn effective ways of managing the baby’s care,” she said. “They’re capable of taking care of their child in the supported environment that they currently live in.”

She added that while the parents may need assistance with some tasks, they will eventually adapt and learn.

There is a misperception that people with disabilities that affect their speech have “lower cognitive ability,” Soulliere said, but that’s not the case.

“There needs to be more education … especially essential services like CAS need to make sure that their workers are experienced and have exposure to persons with disabilities, so they can more adequately see the ability that also accompanies the disability.”

https://www.google.ca/amp/s/www.thestar.com/amp/news/gta/2012/05/04/disabled_couple_thrilled_theyll_be_able_to_keep_their_baby.html 

Territory Families urged to improve staff training after sick Katherine boy removed from family

November 24, 2019

https://www.abc.net.au/news/2019-11-22/lebron-martin-taken-from-family-by-territory-families/11730776

Territory Families urged to improve staff training after sick Katherine boy removed from family

BY MELISSA MACKAY

FRI AT 1:16AM

Darwin Local Court

PHOTO The department should have provided more support, the coroner found.

ABC NEWS: STEPHANIE ZILLMAN

Territory Families was unjustified in its decision to remove a four-year-old Indigenous boy from his family four months before he died, the Northern Territory coroner has found.

Key points

Lebron Martin was removed from his family by Territory Families on the assumption of “neglect”

His health and family responded well to community support

The coroner has recommended Territory Families train its staff better to help support children and families with disabilities

Lebron Martin died in the arms of his father Dwayne Roger on December 13, 2017, from complications related to a rare congenital and fatal condition, Niemen Pick Type C.

He was the second of his parents’ children to suffer from the disease, with his older sister Leishana, passing away at four months old.

Lebron struggled with developmental delays and weight gain, but a coroner’s report found Territory Families saw this as “neglect” and instead of providing support to Lebron’s family, the Katherine boy was taken into foster care.

“When it was indicated by the Office of Disability that they could not fund or provide sufficient support, the Department of Territory Families considered the only option to be the removal of Lebron from his family,” Coroner Greg Cavanagh wrote.

“In my view they were not justified in so doing,” he said.

The coroner found Lebron’s removal from his family was a breach of the Convention on the Rights of Persons with Disabilities.

The town of Katherine, Northern Territory

PHOTO Lebron Martin and his family were from Katherine.

ABC NEWS: MITCHELL WOOLNOUGH

Family ‘struggled’ after support withdrawn

Lebron was in the sole care of his parents and grandmother for the first three years of his life, through numerous hospital visits and surgery interstate.

He attended child care for about a year, where he had ongoing visits from an occupational therapist and was found to be making consistent weight gains.

However, as his function declined and feeding became more difficult, Lebron started losing weight and his parents failed to bring him to some clinic appointments.

The coroner found Territory Families saw his weight loss as “neglect”, rather than a sign his family required ongoing support.

“Initially they were given support, but when support was withdrawn, they struggled,” Mr Cavanagh said.

“Rather than being an indication that like services should be reinstated to support the family, it seems that the department believed it be a reason that Lebron needed to be taken into care,” Mr Cavanagh said.

The department ultimately conceded it should have done more to support the family, but the inquest was initially told the support services required did not exist in Katherine.

“Had ongoing intensive case management and long-term respite care existed in the community, this case would have been unlikely to have required the intervention of Territory Families,” a department representative said at the inquest.

The coroner found department staff sent emails on July 24, 2017, in an attempt to ask services for assistance, but they did not wait to receive a response.

A foster care placement for Lebron was found the next day.

The emergency wing of the Royal Darwin Hospital.

PHOTO Lebron Martin was admitted to Royal Darwin Hospital three times in one week.

SUPPLIED: JACK BULLEN

Mother not allowed to feed child

After an almost three-week stay in hospital, Lebron was released into the care of Territory Families on August 4, 2017.

Despite telling Lebron’s mother, Kara Martin, she would have daily access to her son between 10:00am and 4:00pm while he was in care, Territory Families only facilitated three-hour visits on most weekdays.

The time was cut back because the department decided “the mother should not feed the child at all”, despite hospital nursing notes reading: “Observed Kara to do the NGT feeds this morning. She did well, knows what to do.”

“I acknowledge that allowing Ms Martin to feed Lebron … should have been supported by the family,” Territory Families representative Karen Broadfoot later conceded.

While in care, Lebron was taken to Darwin for a week when his foster carer needed respite.

He was taken to hospital three times during that week and was admitted to Katherine District Hospital a few days after his return in early December 2017.

Two surgeons operating in scrubs.

PHOTO Lebron was in the sole care of his parents and grandmother for the first three years of his life, through numerous hospital visits and surgery interstate.

UNSPLASH: JAFAR AHMED

Lebron died in hospital nine days later.

The coroner made one recommendation after the inquest into Lebron’s death found he should not have been removed from his family.

“I recommend that the CEO of Territory Families ensure that staff have the training and resources to appropriately support children with disabilities and their families,” he wrote.

Mom and Health Director Fight for Care (2011)

November 16, 2019

Mom and health director fight for Jeremy’s care (2011)

https://ammsa.com/publications/windspeaker/mom-and-health-director-fight-jeremy’s-care

Article Origin

Author

By Jennifer Ashawasegai Windspeaker Contributor PICTOU LANDING FIRST NATION, N.S.

Volume

29

Issue

5

Year

2011
Maurina Beadle holds a picture of her son Jeremy.

Like any 16 year old, Jeremy Beadle loves music and going for a cruise. But, his mom, Maurina worries that if he’s institutionalized, Jeremy could go into a vegetative state.

Maurina says, “Jeremy would get less care away from his family and community, and could become self abusive. He would become just like a vegetable.”

Jeremy has hydrocephalus, cerebral palsy, autism and spinal curvature. Hydrocephalus is a medical condition in which there is an abnormal amount of water on the brain. He recently had a permanent shunt replaced in the lumbar region of the spine.

Maurina has been caring for Jeremy at home in Pictou Landing First Nation, Nova Scotia all his life. But things changed last year when extra care was called when Maurina ended up in a wheelchair after she suffered a stroke.

Health care workers were sent to the home to help the single mom, who now uses a cane, care for Jeremy. She needed help to bathe, dress and feed the youngest of her two sons.

Since then, the First Nation has been paying extra for the care workers and is starting to become tapped for money. Using Jordan’s Principle as the foundation of a complaint, the band is taking the federal government to court over lack of timely and adequate care funding for the struggling family.

Right after Maurina’s stroke, said Phillipa Pictou, health director at Pictou Landing, “I put them in for more services, in the spirit of Jordan’s Principle, because they needed the care right then. I wasn’t about to argue over which government was going to pay for it.”

Jordan’s Principle is a child-first standard adopted in the House of Commons in late 2007. It was named in honor of Jordan River Anderson of Norway House Cree Nation in Manitoba. The five-year-old boy died in hospital after spending two unnecessary years there while the provincial and federal governments argued over who would pay the bill for his care on reserve.

The principle calls on the first government of contact to pay the bill to look after the child, and then sort out which government is responsible for payments later.
The principle has been in place for about four years now, and not only does it take time to access the Jordan’s Principle funding of $11 million, it also seems very difficult.

Pictou says, “At that point, I was trying to figure out how to access the money through Jordan’s Principle… it’s taken us a whole year… they [governement] didn’t want to provide us with very much information in the beginning, and they still don’t really.”

The way it works, Pictou said, is that they needed to be turned down for ‘normative’ care, which means the allowable funding off-reserve. Pictou said they needed the province to do the assessment. But, there was another wrench thrown in the works.

“We were told, Continuing Care, which would normally do the assessment, is not allowed to come on the reserve at all, even though the reserve doesn’t have access to that kind of assessment,” said Pictou.

The band ended up obtaining Ministerial Health approval to be able to have the assessment completed, without taking on any extra financial burden.

Once the assessment was complete, Pictou said case conferences were scheduled between the First Nation, Aboriginal and Northern Affairs Canada, First Nations and Inuit Health Branch, and provincial services, such as Continuing Care, and the local health unit, along with Jeremy’s mom.

Pictou was hoping they could figure out how to access Jordan’s Principle, and after five such conferences, she said, “they came back with a cap of $2,200 for services for any one family, and, after that, the child would have to be put into an institution.”

Pictou learned that an institution would cost about $350 a day, which works out to just over $10,000 a month. The community had been trying to get at least $4,000 a month above the cap for the extra services for Jeremy and his mom.

“I did not think that seemed right, and if that happened off reserve, that wouldn’t have been accepted.”

After investigating the issue, Pictou came across a court case where a woman won her case against the province to obtain more than the cap, plus Pictou also found policies in the Community Services policy book.

“They have a whole section on extraordinary and exceptional circumstances, and Maurina and Jeremy meet all of them.”

“It’s right in the provincial policy that if you have any one of those situations, that your case manager could approve either long- or short-term care above the $2,200 cap.” said Pictou. The band was also told it wasn’t allowed to access other funding, unless they wanted to re-do the entire funding agreement with Aboriginal Affairs Canada. A new agreement would have affected all of the social funding for the community.

Pictou was persistant, and brought the matter to tribal council, which was then sent to the Assembly of First Nations and the Child and Family Caring Society for support. Pictou Landing now has the backing of both organizations.

Cindy Blackstock, executive director of the First Nations Child and Family Caring Society, says the issue is definitely a human rights issue. Since First Nation citizens on reserve have recently been brought under the Human Rights Act, Blackstock said, “We’re hopeful it will have an impact on this case. It’s fundamental that First Nations people be recognized fully as peoples under the law and have access to human rights.”

In an email, Aboriginal Affairs and Northern Development spokesperson Genevieve Guibert said it wasn’t an appropriate time for the department to comment since the matter is before the courts. Aboriginal Affairs also provided a short brief on Jordan’s Principle.

In another email, Health Canada, referred the issue to Aboriginal Affairs Canada because “Jordan’s Principle is primarily led by Aboriginal Affairs and Northern Development.”

Photo caption: Maurina Beadle holds a picture of her son Jeremy. She wants her disabled son to stay with her on reserve in her home, but Aboriginal Affairs says it doesn’t warrant the expense, and says the funding cap for care would be exceeded, so the option now is to see the boy institutionalized.

Photo: Janet Francis

Donald Grey Triplett: The first boy diagnosed as autistic / the power of love, family & community support

October 16, 2019

‪Donald Grey Triplett: The first boy diagnosed as autistic – BBC News

http://www.bbc.com/news/magazine-35350880‬

Donald Grey Triplett: The first boy diagnosed as autistic
21 January 2016 Magazine
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Image copyright TRIPLETT FAMILY ARCHIVES Donald Grey Triplett in a field, as a boy
Donald Grey Triplett was the first person to be diagnosed with autism. The fulfilling life he has led offers an important lesson for today, John Donvan and Caren Zucker write.

After Rain Man, and The Curious Incident of the Dog in the Night-time, the next great autism portrayal the stage or screen might want to consider taking on is the life of one Donald Grey Triplett, an 82-year-old man living today in a small town in the southern United States, who was there at the very beginning, when the story of autism began.

The scholarly paper which first put autism on the map as a recognisable diagnosis listed Donald as “Case 1” among 11 children who – studied by Baltimore psychiatrist Leo Kanner – crystallised for him the idea that he was seeing a kind of disorder not previously listed in the medical textbooks. He called it “infantile autism”, which was later shortened to just autism.

Born in 1933 in Forest, Mississippi, to Beamon and Mary Triplett, a lawyer and a school teacher, Donald was a profoundly withdrawn child, who never met his mother’s smile, or answered to her voice, but appeared at all times tuned into a separate world with its own logic, and its own way of using the English language.

Donald could speak and mimic words, but the mimicry appeared to overtake meaning. Most often, he merely echoed what he had heard someone else say. For a time, for example, he went about pronouncing the words “trumpet vine” and “chrysanthemum” over and over, as well as the phrase: “I could put a little comma.”

Image copyrightTRIPLETT FAMILY ARCHIVES Triplett as a baby
His parents tried to break through to him, but got nowhere. Donald was not interested in the other children they brought to play with him, and he did not look up when a fully-costumed Santa Claus was brought to surprise him. And yet, they knew he was listening, and intelligent. Two-and-a-half years old at Christmas time, he sang back carols he had heard his mother sing only once, while performing with perfect pitch. His phenomenal memory let him recall the order of a set of beads his father had randomly laced on to a string.

But his intellectual gifts did not save him from being put in an institution. It was the doctors’ order. It was always that way, in that era, for children who strayed as far from “normal” as Donald did. The routine prescription for parents was to try to forget the child, and move forward with their lives. In mid-1937, Beamon and Mary complied with the order. Donald, three years old, was sent away. But they did not forget him. They visited monthly, probably debating each time they began the long drive home to Forest whether they should just take him back with them after one of these visits.

Image copyright TRIPLETT FAMILY ARCHIVES Triplett with his parents
Image caption Donald’s parents refused to let him be brought up in an institution
In late 1938, that is what they did. And that is when they brought him to see Dr Kanner in Baltimore. Kanner was stymied at first. He was not sure what psychiatric “box” to fit Donald into, because none of the ready-made ones seemed to fit. But after several more visits from Donald, and seeing more children with overlapping presentations in behaviour, he published his groundbreaking paper establishing the terms for a new diagnosis.

From there, the history of autism would unfold across decades, playing out in many and varied dramatic episodes, bizarre twists, and star turns, both heroic and villainous, by researchers, educators, activists and autistic people themselves. Donald, however, had no part in this. Instead, after Baltimore, he had gone back to Mississippi, where he spent the rest of his life, unremarked upon.

Image copyright TRIPLETT FAMILY ARCHIVE Donald Grey Triplett photographed as a young man
Well, not exactly. Donald is still alive today, healthy at 82, and a major figure in our new book. When we first tracked him down, in 2007, we were astonished to learn how his life had turned out.

He lives in his own house (the house he grew up in) within a safe community, where everyone knows him, with friends he sees regularly, a Cadillac to get around in, and a hobby he pursues daily (golf). That’s when he is not enjoying his other hobby, travel. Donald, on his own, has travelled all over the United States and to a few dozen countries abroad. He has a closet full of albums packed with photos taken during his journeys.

His is the picture of the perfectly content retiree – not the life sentence in an institution which was nearly his lot – where he surely would have wilted, and never done any of those things. For that, his mother deserves enormous credit. In addition to bringing her boy home, she worked tirelessly to help him connect to the world around him, to give him language, to help him learn to take care of himself.

Something took in all this, because, by the time he was a teenager, Donald was able to attend a regular high school, and then college, where he came out with passing grades in French and mathematics.

Image copyright JOHN DONVAN & CAREN ZUCKER Donald today on a golf course, getting out of a golf buggy
Credit for these outcomes must also go to Donald himself. It was, after all, his innate intelligence and his own capacity for learning which led to this blooming into full potential.

But we saw something else when we went to Forest – and this is where we think the movie of Donald’s life would get interesting. The town itself played a part in Donald’s excellent outcome – the roughly 3,000 people of Forest, Mississippi, who made a probably unconscious but clear decision in how they were going to treat this strange boy, then man, who lived among them. They decided, in short, to accept him – to count him as “one of their own” and to protect him.

We know this because when we first visited Forest and began asking questions about Donald, at least three people warned us they would track us down and get even if we did anything to hurt Donald. That certainly told us something about how they saw him.

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Autism

Autism spectrum disorder (ASD) is a condition that affects social interaction, communication, interests and behaviour
In children with ASD, the symptoms are present before three years of age, although a diagnosis can sometimes be made after the age of three
It’s estimated that about one in every 100 people in the UK has ASD – more boys are diagnosed with the condition than girls
There’s no “cure” for ASD, but speech and language therapy, occupational therapy, educational support, plus a number of other interventions are available to help children and parents
Sources: SourceNHS Choices – Autism spectrum disorder ; NHS Choices – Living With Autism

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In time, however, as we gained more people’s trust, more details came out about how, throughout the years, Donald was embraced. His school yearbook is full of scribbled notes from classmates talking about what a great friend he is. A few of the girls even seemed a little sweet on him.

We learned that he got cheered for his part in a school play, that people regarded his obsessive interest in numbers not as odd, but as evidence that he must be some kind of genius. We met a man Donald knew in college, now an ordained minister, who tried to teach him to swim in a nearby river. When that failed, he tried to give Donald lessons in how to speak more fluidly, which was also something of a lost cause.

That is because Donald still has autism. It did not go away. Rather, its power to limit his life was gradually overcome, even though he still has obsessions, and talks rather mechanically, and cannot really hold a conversation beyond one or two rounds of exchanged pleasantries. Even with all that, though, he is a fully fledged personality, a pleasure to hang out with, and a friend.

Image copyright JOHN DONVAN & CAREN ZUCKER Donald with the authors, John Donvan and Caren Zucker
Image caption Donald with the authors, John Donvan and Caren Zucker
What Donald’s story suggests is that parents hearing for the first time that a child is autistic should understand that, with this particular diagnosis, the die is never cast. Each individual has unique capacity to grow and learn, as Donald did, even if he hit most of his milestones rather later than most people. For example, he learned to drive only in late twenties. But now, the road is still his. Literally.

That is something of a perfect ending. And if the movie of Donald’s life gets made, we hope, when the credits roll, that a line on screen will say something like: “The producers would like to thank the town of Forest, Mississippi, for making this story possible.” But also, we would like to add, by making all the difference, by doing the right thing.

John Donvan and Caren Zucker are the authors of In A Different Key: The Story of Autism

DDS group home provider acknowledges multiple clients missed dozens of medical appointments

August 13, 2019

COFAR blog

In the wake of a series of allegations identified by COFAR of poor care of a group home resident, the president and CEO of the nonprofit group home provider has acknowledged missed medical appointments for multiple clients, “failures to follow protocols,” and financial misappropriation in two residences.

The provider, the Center for Human Development (CHD), is funded by the state Department of Developmental Services (DDS). DDS relicensed CHD in 2017 after issuing a licensure report that did not appear to address those managerial problems.

In an August 1 statement provided to COFAR, James Goodwin, CHD’s CEO and president, said his organization has verified that eight clients in two of its group homes missed a total of 59 medical and dental appointments since 2015.

Goodwin said the missed appointments included primary care visits, specialty care visits, and eye and dental exams, and were “a result of failures to adhere to policies…

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