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in 1933 in Forest, Mississippi, to Beamon and Mary Triplett, a lawyer and a school teacher, Donald was a profoundly withdrawn child, who never met his mother’s smile, or answered to her voice, but appeared at all times tuned into a separate world with its own logic, and its own way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

line
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

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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…

View original post 1,322 more words

It’s Not That Simple

July 14, 2019

It’s Not That Simple

It’s Not That Simple

I had a phone call a couple of weeks ago from a producer (Brenda Finley) with Bell Media.  She had been referred to me by a social activist that I have a lot of respect for, Velvet Martin.  She asked me if I would be interested in joining a panel discussion on Alberta Prime Time to discuss the issues faced by a parent with a disability.

We spoke for about twenty minutes exchanging information and doing a cursory overview of her expectations for the panel discussion.  She was very interested in getting feedback from a parent with a disability regarding any types of support programs that may have been available for me to access if required.  She had indicated that there would be two or three other panel members and that she was also trying to get a government spokesperson.   What I was thinking as we talk was “What services” which I didn’t voice at the time but I did agree to participate.

Since the show was being broadcast from their Edmonton studio a cameraman came to my home with his equipment and a set of questions.  The filming would later be edited to make it appear that I was answering a few questions posed by the host.  The cameraman was at my place for just under two hours and we probably shot fifteen to twenty minutes of tape.  I knew the segment was only thirteen to fifteen minutes long and I wasn’t expecting a lot of face time.  I was more excited over some of the issues that were discussed on the phone.  The most importance was the acknowledgement of the intimidation factor many parents with disabilities face.  That was the issue I wanted to focus on.

Anybody who knows me personally knows I don’t intimidate easily.  However I do know many parents with disabilities that have had to face quiet intimidation when they have looked for some service that may help around the house.  For instances there is an Alberta program were some house keeping services can be made available (up to 12 hours per month) for those with the physical needs.  I have witnessed a government caseworker tell an individual requesting that service, “If it is too difficult to parent we could always look at foster care for your child”.  That one statement has kept more parents with disabilities from asking for any type of support than I care to admit.  That was not an isolated incidence otherwise I wouldn’t be getting as many requests for advocacy service as I get.

So this past Monday I sat down to watch this particular edition of Alberta Prime Time.  The minute I saw the make-up of the panel I knew the conversation was going to go in a very different direction.  Like any segment of society there is fragmentation among those with disabilities.  Bruce Uditsky, who has been the face of the Alberta Association for Community Living for over twenty years, was one of the panelists in the studio.  The Alberta Association for Community Living is primarily focused on developmental disabilities.  Comparing parenting supports for the developmentally disabled parent to that of a parent in a wheelchair is like trying to order Chinese food using a pizza menu.

Now this is not intended to denigrate anyone with a developmental or cognitive disability but there is a world of functioning difference between the needs of these groups.  Contrary to what many people in the general public think all disabilities cannot dealt with the same way.  Just because you put a ramp into the local library does not mean it is accessible.  Anybody with a visual impairment would have issues but based on policy (building code) the library is now accessible because they put in a ramp.  It is the overly simplistic approach that contributes to systemic barriers and those are the ones that need to change.

However that is the essence of most programming for members of the community with a disability.  Not only do different types of disabilities need to be dealt with differently, there also has to be some flexibility for the individual with the disability.  We don’t need to be challenged with support programs that are defined by policy statements designed for gatekeepers.  My prime example of when policy overrides common sense is the policy around the disabled parking placards.  I had polio in 1953 and the results of that are never going to leave me.  However every five years I have to go back to my doctor (taking up valuable health care time), get another letter from him stating I am disabled (at a cost of $50 for the non-medical matter related document) and then go get the parking placard renewed.  I have come to accept the fact that I will always live with the results of my polio so when will those supplying certain services come to accept it as well.   Anyway I realized the moment the program started that there just wouldn’t be enough time in a fifteen minute segment to do justice to the complicated nature of these issues.

After watching the show I came to the conclusion it had more to do with directing a bigger share of limited community resources to those parents with some form of developmental disability with some onsite effective parenting staffing resources.  Again that type of support is very different than me asking for some support in shoveling snow or paying someone to teach my child to skate, as examples.  After watching the show I was left with the feeling that all that was really demonstrated was how fragmented the disabled community is.

Just one man’s opinion.

To get mental health help for a child, some FL parents resort to giving up custody of their child

July 7, 2019

https://www.wptv.com/news/local-news/investigations/to-get-mental-health-help-for-a-child-some-fl-parents-resort-to-giving-up-custody-of-their-child

To get mental health help for a child, some FL parents resort to giving up custody of their child

Katie LaGrone

12:41 PM, Jul 04, 2019

 

What happens when a parent has done nothing wrong but feels they have no other choice but to give up custody of their child to an already overwhelmed state child welfare system?

One Florida father, who we’re not identifying by name, first shared

his story

with us back in December.

His 13-year-old son is diagnosed with multiple mental and behavioral disorders and spent years in and out of clinics. His dad said long term treatment became impossible.

“The insurance would stop paying,” he said. Dad reached his limits last year when, he said, his son tried to poison him and his wife with toilet bowl cleaner. He says his son also attempted to kill the family dog twice. By the time this father spoke with us, his teenage son was facing criminal charges over the incidents.

Young & troubled, FL’s mental health crisis

“I feel like I failed him,” the father told us after describing the gut-wrenching decision he was facing to give up custody of his child so his son could access long-term mental health services.

“It’s just wrong that as a parent I’ve tried everything I can for 5 years but the only way I can get him the help he needs is to give him up,” he said.

Industry insiders says kids in custody can get better treatment for mental illness when the government pays for it versus private insurance.

“It’s sad” said Dr. Robert Card, Director of community-based care for Eckerd Connects. His agency is contracted by the Florida Department of Children and Family Services (DCF) to manage the welfare of roughly 7000 kids in state custody on Florida’s west coast. He says, while these cases are rare, his office will receive nearly a dozen children from parents each year so desperate to get their child help, they decide to give them up.

More from the Florida Investigative Team

“It’s reflective of a mental health system that is inadequately prepared for this kind of behavior and this kind of kid. It’s also reflective of the funding available to families to solve this problem,” he said.

Dr. Card said the state’s lack of resources and know-how to handle extreme cases of child mental illness leaves him searching out-of-state for the right care for some of these kids and taxpayers, he said, can pay up to $1,000 per day for it. He thinks the state needs to be better equipped to handle extreme cases of mental illness in children.

DR CARD.jpg

Beth Stroul is an expert in children’s behavioral health. She recently led a

government study

on this issue which is widely known as child relinquishment. She said, while rare, relinquishment cases can be found nationwide and are often seen as a last resort for desperate parents who have exhausted all efforts to find and access help for their mentally ill child. She believes many states aren’t doing enough to help children with serious mental illness at the community level and early on to prevent child relinquishment.

“It’s more than unfair, it’s really indefensible,” she said. “It’s not a solution, it should never be a solution. The practice needs to be eliminated,” Stroul told us.

Beth.jpg

It’s not known how many children fall into Florida’s system access treatment for mental illness. Like most states, Florida doesn’t keep track of data specific to these cases. According to DaMonica Smith, a spokesperson with the state Department of Children and Families, last year nearly 1000 kids were abandoned by their parents. It’s the only number the state could provide but it doesn’t reveal how many children were placed in the state’s system for the sole purpose of obtaining mental health help. When we asked about child relinquishment for mental health services, a spokesperson responded in an email stating, “[DCF] policy does not permit parents to relinquish their rights in an effort to obtain services.” Smith when on to state, “DCF and community-based care lead agencies will work together to build a service plan that meets the needs of the family.” Still, parents and industry insiders say relinquishment for the purpose of mental health services happens in Florida.

Florida Republican Representative Chris Latvala, who represents Clearwater, has taken on child welfare as a top issue in need of reform. This past session, he unsuccessfully introduced legislation to help improve the state’s foster care system following the death of 2-year-old Jordan Belliveau. He had never heard of parents relinquishing custody of their children for mental health services until we told him.

“That’s unbelievable. There has to be a solution other than telling a parent that they have to give up their parental rights so that they can get their child the help that they need,” he said.

Latvala will be contacting DCF to find out why it’s happening and how to stop it so children in Florida get the help they really need, without losing their family.

Chris Latvala

“It’s putting them in an impossible position that no parent should have to deal with,” Latvala said.

If you feel like the state isn’t doing enough to help your child with mental illness, please let us know by filling out the following contact us form.

Paying foster parents instead of supporting struggling families

June 6, 2019

Although an article referencing BC, I feel it is highly universally applicable as it outlines concisely discrepancies and biases in service delivery. As well, explains that good, loving parents are targets of the System through circumstance as opposed to deed. – VM

‪B.C. paying foster parents instead of supporting struggling families, experts say —The Discourse

https://www.thediscourse.ca/urban-nation/foster-over-families‬

B.C. paying foster parents instead of supporting struggling families, experts say
‘We’re willing to give strangers just about anything to look after kids, but we have this blockage when it comes to supporting families,’ says professor.

BRIELLE MORGAN , KATIE HYSLOP, CHERISE SEUCHARAN AND TRACY SHERLOCK | June 6, 2019

When it comes to child welfare, social work experts and parents in B.C. say we’re investing in the wrong end of the system — pouring money into foster care instead of offering adequate support to struggling families, many of whom are Indigenous.
“We’re willing to give strangers just about anything to look after kids,” says Jeannine Carriere, a social work professor at the University of Victoria, who is Métis. “But we have this blockage when it comes to supporting families.”
As part of a collaborative investigation into B.C.’s child-welfare system, journalists from The Discourse, The Tyee and Star Vancouver asked parents whether they felt they were getting adequate support — financial and otherwise — before their kids were apprehended by B.C. social workers. Of the 30 parents who filled out our questionnaire, 29 told us they weren’t getting the support they needed. Only one parent told us told us the question wasn’t applicable because she and her husband were “financially stable” and had “no issues.”
Data from the Ministry of Children and Family Development shows nearly 75 per cent of the kids in their care by December 2018 were apprehended because of “neglect,” a term experts say is too often linked to poverty. But financial support for at-risk families can add up to less than what is available for foster parents.
“Sadie” — a mother from the Squamish First Nation whose real name we’re withholding to protect her children’s identities — said she knew her son was struggling by the time he was eight or nine years old. She said she “begged” the ministry for support for years, but “no adequate, consistent or relevant services were provided.”
“We were pigeonholed and deemed not critical or important until [our son] was suicidal,” she wrote in our questionnaire. “No cultural supports [were] offered to us.”

“Sadie” (whose name we’re withholding to protect her children’s identities) stands with her sons under the Lions Gate Bridge in North Vancouver.
Brielle Morgan/The Discourse
Ronda Merrill-Parkin, who’s a member of the Fond du Lac First Nation, told us she reached out to ministry social workers when she started feeling depressed last year, to no avail. “I told them that I needed help, and they didn’t listen to me,” she alleges.
She says she placed her children in care on voluntary care agreements, and shortly afterward they were apprehended. That was last October; they were only returned to her in May 2019.
“We’re investing in the wrong area,” says Jennifer Chuckry, executive director of Surrounded by Cedar — one of 24 agencies delegated by the province to deliver child-welfare services to Indigenous children and families in B.C.
“We need to be investing in children and families long before there is a child-protection concern,” she says. “Instead of paying caregivers hundreds of thousands of dollars to keep kids in care.”
Low-income families don’t feel supported
Patricia Douglas is a Chilliwack resident and member of the Douglas First Nation. She says that just prior to her child’s apprehension in 2015, she’d been relying on permanent disability as her main source of income, and she was struggling to afford basics like fresh fruit and vegetables. “I had to look for sales to get the staples to fill my kitchen,” she says.
For Douglas, walking her daughter to school was an exercise in shame.
“Taking her to school, making sure that she had all the clothes and shoes and food [she needed]. It was — it was a bit shameful, you know, being looked down upon.”
After her daughter was apprehended, poverty made it harder to meet the ministry’s expectations, she says.
“I had so many challenges just trying to get to the meetings on foot and on [the] bus,” she says. “[The meetings] were on the other side of town, a 40-minute walk, you know, and I didn’t have $2 for bus.”
B.C. has the second-highest provincial poverty rate in Canada, government statistics show. Around 81,000 children are living in poverty, and many studies have demonstrated the link between poverty and child apprehensions.
For example, a 2017 UBC study looked at 85 child-protection cases that went to trial between January 2002 and June 2015 in B.C. — and found that poverty was “pervasive” in these cases.
“A large majority of the cases involved a woman raising children in conditions of extreme economic disadvantage and social marginalization, consistent with other data that shows that apprehensions occur more often in poor families headed by lone mothers,” the study found.
More than half of the parents who filled out our questionnaire said they’d been receiving some sort of income or disability assistance when their children were taken away. Many had experienced domestic abuse. And while one parent told us they weren’t looking for support prior to their children’s apprehension, the vast majority of the parents we heard from told us they were actively seeking financial support, respite care, mental health services or other kinds of support for their families.

Ronda Merrill-Parkin says she didn’t want her kids to be apprehended; what she wanted was help navigating her depression.
Brielle Morgan/The Discourse
Tim Felger, a pot activist based in Abbotsford, says he was on welfare when his child was removed in 2011. He says he was living in the cheapest apartment he could find in Abbotsford, but by the time he paid his rent — $600 per month — he had next to nothing left for food and other basics.
The B.C. government’s monthly rate for income assistance — meant to cover shelter, food and transportation — was just $610 at the time.
“With the government having an eye toward taking your child and keeping it, you know, you’re emotionally traumatized,” he says.
“There’s a tremendous power imbalance to begin with,” he says, “and then, when you’re working against all these other stresses, if the ministry’s giving you a hard time, sometimes you can work through it. But if you’ve got nothing to go home and eat, you know, it sort of amplifies and exacerbates all the problems you have.”
According to an email from B.C.’s Ministry of Children and Family Development, “the strategic direction of the ministry is to invest in supports to help preserve families, while continuing to ensure the safety of children and youth.”
But there’s a perception among the parents we heard from that the government provides more support for foster parents than they do for families who are struggling and at risk of separation.
And this perception isn’t unique to people who’ve had their kids removed.
“When they remove children from a family in a home and put the child into another home, they pay that family a substantial amount of money to look after these children,” says Cheryl Casimer, who sits on the First Nations Summit Task Group in B.C.
“Why didn’t they just take that money they were going to pay to foster care into the family and put preventative measures and family supports into place — so that that family unit can stay together?”

Cheryl Casimer, who sits on the First Nations Summit Task Group in B.C., questions the government’s allocation of funds.
Courtesy of First Nations Summit
When asked what kind of support would have made a difference to her family, Douglas says, “more community support with the kids or more access to food banks or more access to cheaper transportation — little things to make life a little bit easier.”
According to the ministry’s online reporting portal, in 2017/18 the ministry spent $306 million on “Children & Youth In Care.” In comparison, the ministry spent $119 million on “Family Support Programs.” But it isn’t clear which families the ministry is supporting with that money — foster parents or parents at risk of losing their kids.
The Discourse asked the ministry to clarify. “Unfortunately, a more detailed breakdown of ministry spending on children and youth in care versus family preservation cannot be provided without extensive further analysis,” a ministry spokesperson replied via email.
“This is due in part to the way programs are funded,” he explained. “Some programs and service lines will serve clients both in and out of care; some contracts provide services for families as an alternative to removal, while also offering services to children who have been removed.”
Casimer calls that response “scary, in that they’re not able to put their finger on the amounts that are specific to supporting families, particularly Aboriginal families.”
“We hear on the ground that even though contracts have been awarded to certain organizations, the services that are being provided to Aboriginal children and families is minimal,” she says.
According to the ministry, the $119 million for Family Support Programs represents “external contracts only and did not include those support services offered by ministry staff.” So it doesn’t capture the full picture “of the ministry’s investment in family supports,” the spokesperson said.
Nor does it reflect support services provided by other “contracted agencies, community partners and other ministries which are not represented in the scope of MCFD spending,” he added.
He also noted that the overall number of kids being taken into care in B.C. has steadily declined from 7,736 in 2015 to 6,263 in March 2019.
Casimer says the First Nations Summit is currently pushing the province and the federal government for “a full evaluation of all of the contracts that are earmarked with anything to do with Indigenous or Aboriginal. So that we can see exactly where the funds are going.”
The Discourse has filed a freedom of information request for a more detailed breakdown of the ministry’s “Family Support Programs” budget.
‘Parent unable/unwilling to care’
As of December 2018, nearly three quarters of all kids in the ministry’s care were apprehended because of neglect — and according to child welfare experts like Casimer, Chuckry and professor Nico Trocmé, “neglect” is too often code for poverty.
But it shouldn’t be considered neglect when “a family is struggling to be able to make ends meet and put food on the table and clothes on the kids’ back,” Casimer says, “particularly if you’re in a community where there’s no economy, there’s no capacity.”

Screenshot of the Ministry of Children and Family Development’s reporting portal, taken June 4, 2019, outlining its reasons for apprehending “children and youth in care.”

Screenshot of the Ministry of Children and Family Development’s reporting portal, taken June 4, 2019, outlining the types of “neglect” that lead to children being apprehended.

Often what we’re actually talking about is poverty, says Jennifer Chuckry, who has more than two decades of social work experience.
In a system where Indigenous kids are grossly overrepresented due to the ongoing impacts of colonial policies and intergenerational trauma, fully three quarters of Indigenous kids in care in B.C. were apprehended because of “neglect.”
And according to the ministry’s data, nearly half of those kids were removed because their allegedly neglectful parent was “unable or unwilling to care.”

Ronda Merrill-Parkin plays with her daughter in a Vancouver schoolyard.
Brielle Morgan/The Discourse
“There are many circumstances where a family is struggling with addiction or whatever, and yeah, there is an inability to [parent], but unwilling to? I have yet to meet a parent in my career that was unwilling,” Chuckry says.
“Our families are struggling in poverty, especially when you look at trying to make it in Vancouver or Victoria,” she continues. “In these larger centres, how do you rent a place if your only income is income assistance? You can’t even rent a cardboard box with what they give you, let alone have anything extra. These systems aren’t set up to see people become successful.”
At least a quarter of kids who are removed for neglect are removed because social workers determined that neglect led to physical harm or the “likelihood of physical harm,” according to an email from the ministry.
Physical harm due to neglect is defined as: “The parent has willfully not provided for the child/youth’s physical needs to the extent that the child/youth has already suffered or is imminently likely to suffer harm (injury, impairment or pain),” the ministry explained via email.
Physical harm in such cases also includes neglect that “exposes the child/youth to life-threatening hazards,” the ministry added, such as accessible toxic substances, dangerous weapons, or unguarded wells or balconies.
When it comes to assessing a likelihood of physical harm, the ministry says, social workers are looking for “a pattern or cluster of indicators that the parent does not or cannot provide for the child/youth’s physical necessities, including food and shelter, nurturance, and protection from risks.”
But “one of the main challenges associated with poverty is that of attaining safe and adequate housing,” wrote UBC nursing student Jacqueline Denison, in a paper published by the Journal of Advanced Nursing in 2014.
“From the health care provider participants’ perspectives, women living in poverty often live in environments that are not viewed by the child protection system as safe or adequate for raising children,” she said.
Chuckry says she knows of families in Victoria who have been separated by ministry social workers because of housing — because “the family house is not safe and they have no other option,” she says.
According to a ministry statement sent to The Tyee last November: “Essentially, if a family’s housing situation is the primary source of a health and safety concern involving a child, the ministry would – and must, as per legislation – explore all available less disruptive means,” including seeking other affordable housing options with the family.
But it takes resources to “explore all available less disruptive means.” And seven of eight social and support workers who responded to the support workers’ survey circulated by journalists at The Discourse, The Tyee and Star Vancouver, indicated there are not enough supports available for the families they work with.
“Due to financial constraints, requests for services are denied if they do not meet the extremely high criteria — meaning that services aren’t available until family is in crisis,” wrote one B.C. social worker with nearly a decade of experience, who asked that her identity be protected because she fears she losing her job.
“Prevention is definitely not a priority. Crisis intervention is,” she wrote.

Tristen Wybou works with families in Prince Rupert and says they often struggle with “significantly long waitlists, untrained workers [and] lack of accessibility.”
Patrick Shannon/Courtesy of Tristen Wybou
“I consistently have parents who are made to feel ‘crazy’ for trying to advocate their child’s need for services,” said Tristen Wybou, a counsellor who works with families in Prince Rupert and who also filled out our questionnaire.
“Some kudos does have to be given to the many workers who are truly doing the best with what they are given,” Wybou continued in a phone interview. “However, what they are given is often a whole pile of files and no support until they burn out completely.”
This lack of available resources and support disproportionately affects Indigenous mothers, Denison wrote in her nursing paper.
“For many Aboriginal women, social, political and economic factors such as poverty, inadequate housing, unemployment, substance use, and violence — largely stemming from a history of colonialism and ongoing neocolonial polices — have created a depiction of these women as neglectful mothers,” she wrote.
If anyone is being neglectful, it’s the child-welfare agencies, social work professor and activist Cindy Blackstock wrote in her 2011 paper, Wanted: Moral Courage In Canadian Child Welfare.
“If neglect means not doing the right thing for children even when you know better and can do better, and have the resources to do it, then too often child protection neglects First Nations children and their families,” she wrote.

Ronda Merrill-Parkin was reunited with her kids in May 2019.
Brielle Morgan/The Discourse
“For over a decade, leading studies, such as the Canadian Incidence Study on Reported Child Abuse and Neglect (CIS), have suggested that culturally based services targeted at poverty, poor housing and substance misuse would reduce the over-representation of First Nations children in child welfare care,” she continued.
“Systemic changes to address these factors have been negligible.”
What kind of supports can low-income parents and foster parents access?
It’s difficult to say exactly how much support is available to low-income parents because it depends on so many variables: Are the children living with disabilities? Have they been diagnosed with Autism spectrum disorder, Fetal Alcohol Spectrum Disorder or complex health needs? Are they deaf or hard of hearing? For parents requiring income assistance, is it a one-parent family or a two-parent family? Does either parent meet the Persons with Persistent Multiple Barriers criteria?
If a low-income single parent in B.C. is supporting one child with a disability, they could receive $1,923 per month (or $1783 if the child is six or over) — if they file their taxes and successfully apply for the Disability Tax Credit, child disability benefit, B.C. Early Childhood Tax Benefit, Canada Child Benefit and income assistance.
Financial support for foster parents is a little more straightforward. Foster parents are eligible for monthly payments regardless of whether they have additional income. And if they’re caring for kids with especially complex needs, their basic monthly payment of $983 (or $1089, if the child is 12 or over) gets bumped up.
For example, foster parents trained to care for children requiring “extensive daily care,” additional support, supervision and “interventions related to mental health concerns” are eligible to receive up to $2800 a month per child age 11 and under ($2905 if the child is 12 or older).
The child disability benefit that low-income parents can apply for isn’t nearly as nuanced. The federal government doesn’t offer different levels of funding based on the complexity of a child’s need. Instead, parents raising kids with “severe and prolonged impairments in physical or mental functions” can get up to $231 per month per child.
And it’s not as simple as a cheque in the mail. ��“To receive the Child Disability Benefit an individual must be eligible for the Canada Child Benefit for that child, and the child must also be eligible for the Disability Tax Credit,” a spokesperson for the Canada Revenue Agency told The Discourse via email.
This means filling out lots of forms, and then getting doctors to fill out forms, which the Canada Revenue Agency then has to approve. And it means staying on top of your taxes.
“Once an individual qualifies for the CDB [Child Disability Benefit] and the CCB [Canada Child Benefit], he or she needs to file an income tax and benefit return every year, even if they did not have income in the year,” the spokesperson said.
Beyond direct financial support, there are other factors to consider — like uneven access to support services such as respite care for kids with special needs.
One of the Ministry of Children and Family Development’s guiding principles states: “If, with available support services, a family can provide a safe and nurturing environment for a child, support services should be provided.”
The ministry says it provides some supports to families at risk of losing their kids, including access to limited discretionary funds to help pay for unforeseen costs; and culturally appropriate family preservation, mental health, and addictions’ services provided through third-party agencies contracted by the ministry.
But according to the 2017 study Intersecting Challenges: Mothers and child protection law in BC, “available support services presumably vary widely depending on location in the province.”
Just because a support exists in theory doesn’t mean it’s accessible to parents who are living in rural or remote communities, coping with the stressors of chronic poverty or systemic racism, or navigating the challenges of supporting children with disabilities.

“Sadie” (not pictured) says she had to push for nearly a decade to get a psycho-educational assessment for her son (above), after he’d expressed suicidal ideas at age 10.
Brielle Morgan/The Discourse
“Dawn”, whose real name we’re withholding to protect her children’s identities, is an Indigenous mother in Merritt who’s living with disabilities. She says when she asked for respite care for her son, who’s living with autism, she was waitlisted for two years. One week after her son was placed in a foster home in Merritt, she says she heard from the foster parents that they were already receiving respite care.
“Families might be waitlisted for respite,” the ministry told The Discourse via email. “To access respite, families must go through an initial income-testing process” to determine “the parental contribution towards the service.”
When asked how long parents are waiting, on average, for respite care requests to be processed, a ministry representative said: “While hard data on waitlist times for both foster parents and community families is unavailable, we understand that timely access to respite services presents a challenge for many caregivers.”
In an effort to “significantly reduce the waitlist for respite services,” the B.C. government allocated an extra $6 million per year to respite care in its 2019 budget.
Adrienne Montani is the provincial coordinator at First Call: BC Child and Youth Advocacy Coalition. She says when parents of children with special needs are waitlisted for services, like assessments and therapies, it sets up huge inequities between families that can afford to pay for private assessments and those that can’t.

Adrienne Montani has spent nearly two decades at B.C.’s First Call, working to eradicate child poverty.
Sarah Race
“I think poor parents [and] caregivers wonder why their below-poverty-level incomes are not addressed, or they have to beg for supplements, or why they have to cope with limits on subsidized necessary dental care or vision care expenses,” she says. “Whereas if their children go into care, the limits and access to support services are different.”
According to an email from the ministry, foster parents do not have to be income-tested in order to receive respite care services. Foster parents caring for children with especially complex physical, mental, behavioural or emotional needs (i.e. level 2 and 3 foster parents) automatically qualify for up to three days of relief or respite care per month — regardless of how much money they make.
Prevention: the politics and the price tag
A recent study from the University of Ottawa found the current “protection-focused” system “fails to recognize the contextual challenges that lead to disadvantaged starting points for many communities” — and “significantly underfunds prevention.”
Decades of policies around residential schools, for example, have led to systemic issues unique to Indigenous communities, the study found, and “there is a cost to closing these gaps.”
Closing these gaps will cost hundreds of millions of dollars, the study says. More, if the Canadian government aims to raise Indigenous communities to median household incomes for their respective provinces, rather than just above the poverty line.
Mary Teegee says greater investment in First Nations families would “be a first step in reconciliation.”
She’s the executive director of child and family services at Carrier Sekani Family Services. She also chairs the Delegated Aboriginal Agencies Provincial Forum, and represents B.C. on the National Advisory Committee on First Nations Child and Family Services.

Mary Teegee is working at many levels to reform Canada’s child-welfare system.
Jayson Hencheroff/Courtesy of Mary Teegee
It’s about equity, she says. If Canada truly wants to see Indigenous children and families thrive, we need to provide sufficient resources — like community mental health workers — so families are supported to heal and work through the intergenerational trauma wrought by the government’s actions, she says. “We’re going to need more help because of the atrocities.”
She’d like to see “an Indigenous national social policy where we actually look at those factors that are weakening families and communities: the issues of housing, the issues of poverty.”
“All of those pieces are really important to consider in a holistic sense,” she says, “rather than just looking at them in silos.”
She adds that a groundbreaking ruling by the Canadian Human Rights Tribunal in 2016, which found that the Canadian government was discriminating against Indigenous kids on reserves in the provision of child and family services, has been a game-changer with respect to funding for preventative services.
Before the ruling, “we didn’t get funded for prevention services for First Nations children on reserve,” Teegee says. Delegated Aboriginal Agencies could only bill for expenses related to keeping kids in care, she says.
“Now, not only do we bill for that, but we are also able, as per the Canadian Human Rights Tribunal, to bill for prevention, so that the children could stay with their families in community.”
While the Human Rights Tribunal’s decision may be spurring more support for families on reserve, that’s just one piece of the funding puzzle.
Indigenous and non-Indigenous parents who filled out our questionnaire shared many ideas for supports that could help families stay together: monthly allowances for clothing, food, transportation and rent; increases to income and disability assistance; safe, adequate and affordable family housing; access to counselling and other mental health treatment; affordable child care; culturally appropriate drug and alcohol treatment; respite care; and Indigenous social workers and foster families, to name just a few.��Many of these recommendations were echoed in the National Inquiry into Missing and Murdered Indigenous Women and Girls’ final report, which was released on June 3.
They’re also reflected in a new strategy introduced by the B.C. government in March. TogetherBC is B.C.’s poverty reduction strategy and it aims to reduce poverty by 25 per cent, and cut child poverty in half, over the next five years.
Under this new strategy, B.C. has promised to: increase rental relief and place caps on rent increases; build new affordable housing units for low-income families and women and children escaping domestic violence and upgrade old units; eliminate Medical Services Plan premiums; reduce and eliminate some fees associated with higher education accessibility; and move towards a universal child care system.
The province and federal government also signed a bilateral agreement in February 2018 committing $153 million over three years to open more child care spaces and increase subsidies and bursaries for early childhood educators in the province.
And in February 2019, the B.C. government increased support for extended family members who are caring for children who are unable to live with their parents, addressing a gap in support that was affecting many Indigenous families. This change was recommended by Grand Chief Ed John in his 2016 report on Indigenous child welfare in B.C.
With respect to Indigenous families in particular, the province launched a $6.4-million family preservation services program in 2017, with funding available to any of the province’s 203 First Nations, as well as to the seven child welfare agencies serving Métis people.
Although, when you divide that funding among all eligible Nations, you get $30,000 per nation — not enough to fund one full-time community mental health worker.
“We were pretty disappointed in that decision,” Casimer says. She’s been told there’s more money earmarked for Indigenous communities.
But, she says, what’s really needed is deeper than dollars.
“We need to have full recognition of who we are, our inherent rights, and our rights and title to our land,” she says. “As long as we have to continue to be subjected to federal government funding and not have our own source of revenue to have the flexibility to do the things necessary, we will continue to be dealing with these problems.”
She wants to see Bill C-262, which would require Canada to take all measures necessary to ensure that our laws are in harmony with the United Nations Declaration on the Rights of Indigenous Peoples, not just passed by Parliament, but honoured.
“I think that once those higher level pieces of work are put into place, that gives First Nations the ability to generate an economy from their resourcing, to be able to do things necessary to support the community and to support families — that’s when you’ll see some significant change,” she says.
In the meantime, says Jennifer Chuckry, “we need to be doing everything within our power to keep [families] together.”
“Poverty is still a massive issue in our community,” she says. “If a little bit of a financial investment in a family is going to keep them together, then so be it.”

This story was produced as part of Spotlight: Child Welfare, a collaborative journalism project that aims to deepen reporting on B.C.’s child-welfare system. It was edited by Robin Perelle and fact-checked by Francesca Fionda. Brittany Hobson contributed research. Tell us what you think about the story.

Mothers with disability survey for B.C. and ON

June 3, 2019

 

Are you a mother living with disabilities?

– Are you over 19?
– Are your children living with you (full time or part time), and under 19?
– Do you live in BC or Ontario?

Are you interested in talking about your experiences as a disabled mother?

If you are, Jewelles Smith, PHD (c) would like to hear from you, for a PHD research study titled: Understanding Systemic Barriers Experienced by Disabled Mothers in Canada: A Human Rights Inquiry into how Policy, Legislation and Media Influence Discrimination and Stereotypes of Disability and Mothering.

You are invited to participate in a 2-4 hour interview where you will be asked questions about your reproductive and mothering experiences.

To find out more about this study, contact:

Jewelles Smith, PHD (c)
UBC Centre of Inclusion and Citizenship (CIC)
UBC Okanagan 3333 University Way, Kelowna, V1V 1V7
Phone: 250-200-1200
Email: jewelles.smith@alumni.ubc.ca

For more information:

Dr. Rachelle Hole, Associate Professor
UBC Centre of Inclusion and Citizenship (CIC)
UBC Okanagan 3333 University Way, Kelowna, V1V 1V7
Phone: 250-807-8741
Email: rachelle.hole@ubc.ca

On writing to a 3rd Government, 5th Premier for support of Samantha’s Law

June 3, 2019

Proposal would help parents keep custody

May 29, 2019

https://www.sfgate.com/news/article/Proposal-would-help-parents-keep-custody-of-13897668.php

Proposal would help parents keep custody of troubled kids

on May 26, 2019

Julie Callahan of Grove City with a portrait of her son Jackson in his bedroom at her home May 23, 2019. 

A supportive mother, but Franklin County Children Services has custody of her 14-year-old son. 

Photo: Eric Albrecht, AP

COLUMBUS, Ohio (AP) — A legislative proposal would allow Ohio parents to avoid an often heart-breaking decision: giving up custody of troubled children so they can receive desperately needed and expensive services.

The amendment to Ohio’s two-year budget is aimed at so-called “multisystem youths,” those needing help from service agencies that cover disabilities, child welfare and mental health.

Under the current system, parents sometimes must relinquish custody to the state to obtain help for their child because they don’t have the money and insurance coverage.

The goal of the state should always be to maintain families, state Sen. Jay Hottinger, a Newark Republican, told The Columbus Dispatch.

“You scratch your head and say, ‘How is this loving mother or father having to make the heart-wrenching decision to relinquish custody?'” Hottinger said.

Hottinger is backing a budget proposal that would provide $20 million over two years to give parents other options than giving up custody.

The money would be separate from Gov. Mike DeWine’s proposed increase for children and family services agencies. Most of that spending would go toward child welfare agencies overwhelmed by the state’s opioid addictions crisis.

If approved, the money to prevent custody relinquishment could be used to help parents pay for services not covered by Medicaid or private insurance, such as therapy, in-home and residential care, Hottinger said.

Previous efforts to use federal welfare dollars for the same purpose haven’t been successful, the Dispatch reported.

Julie Callahan of suburban Columbus finally turned custody of her 14-year-old son, who has severe autism and mental illness, over to Franklin County Children Services last fall.

“In my mind, I knew I was doing the right thing,” Callahan told the Dispatch. “In my heart, it was the worst.”

Callahan’s son, Jackson, has been at Cincinnati Children’s Hospital Medical Center since October. So far, case managers haven’t found an opening at a residential treatment center that meets his needs and is acceptable to the children services’ agency, Callahan said.

Tamisha McKenzie, of Columbus, twice surrendered custody of her teenage daughter — in 2015 and 2017 — to obtain psychiatric care. McKenzie often found herself excluded from treatment discussions, and a records mistake once kept her from visiting her daughter in the hospital, she said.

People are recognizing there must be a better way to support such families, said Marla Root of the Ohio Autism Insurance Coalition, a group that advocates for improved insurance coverage for autism spectrum disorders.

___

Information from: The Columbus Dispatch, http://www.dispatch.com

Are you a mother living with disabilities?

May 29, 2019

 

May 2019 Facebook Posting:

 

Are you a mother living with disabilities?

– Are you over 19?
– Are your children living with you (full time or part time), and under 19?
– Do you live in BC or Ontario?

Are you interested in talking about your experiences as a disabled mother?

If you are, Jewelles Smith, PHD (c) would like to hear from you, for a PHD research study titled: Understanding Systemic Barriers Experienced by Disabled Mothers in Canada: A Human Rights Inquiry into how Policy, Legislation and Media Influence Discrimination and Stereotypes of Disability and Mothering.

You are invited to participate in a 2-4 hour interview where you will be asked questions about your reproductive and mothering experiences.

To find out more about this study, contact:

Jewelles Smith, PHD (c)
UBC Centre of Inclusion and Citizenship (CIC)
UBC Okanagan 3333 University Way, Kelowna, V1V 1V7
Phone: 250-200-1200
Email: jewelles.smith@alumni.ubc.ca

For more information:

Dr. Rachelle Hole, Associate Professor
UBC Centre of Inclusion and Citizenship (CIC)
UBC Okanagan 3333 University Way, Kelowna, V1V 1V7
Phone: 250-807-8741
Email: rachelle.hole@ubc.ca

Custody or Care

May 23, 2019

https://radio.wosu.org/post/custody-or-care-parents-surrender-kids-state-mental-health-treatment#stream/0

Custody Or Care: Parents Surrender Kids To State For Mental Health Treatment

By PAIGE PFLEGER • MAY 6, 2019

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Julie Callahan shows a picture of her family, including her son Jackson, who is non-verbal autistic. She says relinquishing custody was the last option left.

Julie Callahan shows a picture of her family, including her son Jackson, who is non-verbal autistic. She says relinquishing custody was the last option left.

PAIGE PFLEGER / WOSU

In Ohio, parents of children with severe mental health issues sometimes face an excruciating decision: To get their child costly care, they must sign over custody to the state. Now those parents are fighting for change, and a chunk of Gov. Mike Dewine’s budget.

Listen Listening…

0:00

As a child, Andrew Butler was diagnosed as non-verbal autistic with a severe intellectual disability. When he had outbursts, his dad Mark Butler would wrap his arms around his son.

Now Andrew is 6’2’’ and more than 200 pounds. Holding him isn’t an option anymore.

Experts told Butler: when Andrew is acting out, run.

“I remember one Thanksgiving where he was having this outburst right in the middle of Thanksgiving dinner, and our evacuation plan was, ‘Everybody run to the basement and lock the door,’” Butler says. “I remember that Thanksgiving I didn’t move. I thought, it’s Thanksgiving, I’m going to eat my Thanksgiving dinner. And I got hurt pretty bad.”

Andrew would hit his family members, punch holes in the walls, bite himself and others. Social workers told Butler that Andrew needed to be put into a residential treatment center to balance his medications and unlearn his violent behavior.

But Medicaid wouldn’t pay for it, nor would Butler’s private insurance. That left the family with only one option.

“The only way to get him that care that he needed was to call our children services agency,” Butler says. “And ultimately, in order for them to fund that care, we would have to surrender custody to the state.”

 

Mark Butler’s son Andrew needed to be placed in a residential mental health treatment center, but insurance wouldn’t pay. So he had to relinquish custody to the state.

CREDIT PAIGE PFLEGER / WOSU

Some families like Butler’s give up custody when they run out of other choices. Other families report feeling forced into it, or having the custody of their other children be threatened.

It’s unclear how often this happens, because most states don’t keep track of the numbers. One study showed at least 12,000 families in 19 states had given their kids up just to get them mental health care. 

“Imagine if you had a kid that was suffering from an illness like leukemia,” Butler says. “And in order to get the medical treatment that they needed, the state was saying, ‘O.K., in order for your child to get the treatment they need, they’re our kid now.’ That’s basically what we’ve been going through.”

Butler has been talking to state lawmakers about ways to fund care and keep families together.

DeWine’s budget proposed doubling aid for family and children services, which would increase funding for multi-system youth – kids like Andrew, whose mental health issues puts them at risk of entering the foster care or justice system. 

“My hope is that my colleagues will understand that spending this money now really helps avoid a lot of issues later,” says state Rep. Sarah LaTourette (R-Chesterland). “This isn’t like if we don’t spend this money on kids in foster care now then we’re going to save it down the road. Down the road it’s going to lead to increased costs, and perhaps a lot of bad outcomes for these kids.”

 

Julie Callahan’s son Jackson is in a psychiatric unit in Cincinnati. She’s waiting to find what state he will be sent to for long-term treatment.

CREDIT PAIGE PFLEGER / WOSU

Connecting families with funding is the first step, LaTourette says. But she cautions some of her fellow lawmakers who proposed ending forced relinquishment altogether.

“That sounds wonderful, but the unfortunate end result of that could be these kids really have nowhere to turn then,” she says.

For Julie Callahan, relinquishing custody was the last option for her son, Jackson. He’s non-verbal autistic and harms himself and others.

“He would put his head through walls, he put his head through my car window, my glass cabinet, he’s broken windows with his head,” she says. “He will bring his knee up to his face and he’s broken his nose from doing that.”

After giving up custody of Jackson a few months ago, Callahan says her family is in the process of healing. Her youngest son has PTSD from the violence in the home. Callahan is still working to patch up the holes Jackson left in the walls.

Right now, Jackson is in a psychiatric unit in Cincinnati. Callahan is waiting to find out what state he will be sent to for long-term treatment. Because she doesn’t have custody, she doesn’t get a say. 

But, like Butler, Callahan is speaking up about state policy, so other families don’t have to trade custody for care.