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Addressing Rhetoric System-Speak – Velvet Martin

January 15, 2019

Addressing Rhetoric System-Speak – VM, 01-2019

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sincerely,

Velvet Martin

#SamanthasLaw

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Parents relinquish custody to get son medical treatment

January 6, 2019

 

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

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

It’s happening all across the country.

By Amanda Tarlton

Jan 03 2019, 11:44 AM

 

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

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

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

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

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

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

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

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

 

Mom of Autistic Boy Threatened with Children’s Services

January 4, 2019

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

January 4, 2019

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

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

LISTEN· 6:28

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January 2, 20192:31 PM ET

CHRISTINE HERMAN

FROM

SIDE EFFECTS PUBLIC MEDIA

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

Christine Herman/Illinois Public Media

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

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

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

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

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

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

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

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

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

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

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

Out of options

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Taking it to the courts

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

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

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

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

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

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

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

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

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

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

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

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

A law that didn’t fix the problem

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

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

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

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

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

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

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

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

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

The underlying problem

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

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

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

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

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

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

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

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

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

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

The difference treatment and family can make

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

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

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

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

Vinnie Manganello/WFYI

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

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

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

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

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

Samantha Martin vs Alberta

December 21, 2018

2011

CANLII Samantha Martin vs. Alberta for Costs of Counsel:

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

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

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

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

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

Court of Queen’s Bench of Alberta

Citation: Martin Estate v Alberta, 2011 ABQB 634

Date: 20111017
Docket: 1103 08609
Registry: Edmonton

Between:

Estate of Samantha Martin and Velvet Martin

Applicants
– and –

Her Majesty the Queen In Right of Alberta

Respondent

_______________________________________________________

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

I. Introduction

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

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

II. The Factual Background

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

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

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

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

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

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

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

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

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

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

III. Issue

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

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

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

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

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

And at para. 30:

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

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

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

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

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

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

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

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

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

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

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

V. Analysis

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

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

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

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

1) Is the Fatality Inquiry judge powerless to act?

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

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

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

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

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

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

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

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

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

hold a conference under this section.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

VI. Conclusion

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

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

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

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

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

Appearances:

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

Doreen Mueller
Alberta Justice
for the Respondent

Young, Autistic and Locked Away

December 12, 2018

Young, Autistic and Locked Away

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Failure to Transform Care

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

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

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

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

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

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

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

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

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

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

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

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

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

Policy Versus Reality in the U.K. and Europe

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

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

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

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

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

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

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

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

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

Profit Motive

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

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

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

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

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

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

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

(2011) BRA father’s right to love

December 12, 2018

2011 

https://www.independent.co.uk/news/uk/home-news/bra-fathers-right-to-love-2295560.html

BRA father’s right to love

Man reunited with son after epic secret court battle to win his liberty

By Andy McSmith and Jerome Taylor

Friday 10 June 2011 00:00 

The Independent

TERI PENGILLEY

Mark Neary, the quietly spoken father who challenged the might of his local council, has won the final battle to secure the liberty of his autistic son.

In emotional scenes at the High Court, Hillingdon Council offered Mr Neary a public apology after a stinging ruling that it had breached a basic principle, when for almost a year it deprived 21-year-old Steven Neary of his liberty.

All social services departments across the country were warned by the judge not to abuse the power they have under the 2005 Mental Capacity Act to lock up people who are judged unable to make decisions for themselves.

It should only be used under “stringent conditions”, Mr Justice Peter Jackson said. “It is not to be used by a local authority as a means of getting its own way on the question of whether it is in the person’s best interests to be in the place at all.”

The Neary case is unique in British legal history because it is the first time that a judge has permitted almost every detail of a private hearing before the previously closed Court of Protection to be made public. The decision to open up the hearings was made after The Independent, backed by other newspapers, argued that the case threw up issues of genuine public concern about the treatment of people said to be “lacking mental capacity”. The judgment was accompanied by an order that prohibits publication of only a small numbers of details of the court proceedings.

Standing on the steps of the Royal Courts of Justice after yesterday’s hearing, Mr Neary said he could never have won the battle to get his son home again without support from the mass media. “We wouldn’t have been here today if it hadn’t been for the press involvement,” he said. He added that Steven had not been harmed or upset by the publicity.

He also praised the courts, which had been “absolutely brilliant”, from the first hearing last December when an order was made allowing Steven to go home, to yesterday’s “fantastic” judgment. “Hopefully other people will read this judgment and fight for what’s right for their kids,” he said.

Specialists in this field of law hailed the judgment as a breakthrough for family rights. “It’s a strong judgment and comes as a stiff warning to local authorities,” said Paul Ridge of the law firm Bindmans. “It’s a call to councils to wake up to the serious implications of detaining disabled people and splitting families.”

John Wadham, of the Equality and Human Rights Commission said: “This is a significant victory for the human rights of disabled people and their carers. [Steven] like everyone else, has a right to personal freedom and a family life.”

Mr Neary has won widespread respect for the persistence with which he fought for his son’s freedom. Yesterday, he was close to breaking down as he listened to the praise he received from the judge, who said: “Mark Neary is an unusual man and he can be proud of the way in which he has stood up for his son’s interests.”

For almost the whole of 2010, Steven Neary was denied the right to live with his father, who had looked after him for almost the whole of his 21 years, because the council’s social services department had decided that it would be in his best interests to be in council care.

On 30 December 2009, feeling ill and exhausted, he asked the council to look after his son, expecting that they would be reunited after “a couple of weeks”. Four days later, he was shocked to learn that social workers proposed to keep Steven in care while they decided what would be in his long-term interests. Looking at the record of a meeting of professionals on 15 January, Mr Justice Jackson concluded: “Hillingdon had by now decided that it would not let Steven go home, but had not revealed this to Mr Neary. Its approach was rather to manage his opposition.”

In February, a social worker sent an email to the support unit where Steven was being held, complaining about the father’s persistence. The email said: “There is always going to be something or other that Mr Neary will bring up and more often than not we are having to appease his needs rather than Steven’s.” Mr Justice Jackson said that Mr Neary “had done nothing to deserve this disrespect”.

In April, after Steven had wandered out of the unit where he was held, seized the glasses off a passer-by and thrown them on to the pavement, breaking them, the professionals decided to take out a Deprivation of Liberty Order. But they kept his father in the dark for three months, until Mr Neary was shocked to receive a letter in July telling him that Steven was to be kept in care permanently.

The judge said that by keeping Steven in a home against his family’s wishes, the council breached ancient rights that were written into the Magna Carta in 1215.

After the hearing, Linda Sanders, director of social care at Hillingdon Council, said: “I would like to apologise to Steven and his father. It is clear that there have been times when we have let both of them down.”

Liberty and open justice: A landmark case

June 2009 The Independent applies to attend proceedings at the Court of Protection, which until now have been kept secret.

30 December 2009 Mark Neary asks Hillingdon Council to take care of his son, Steven, for what he thought would be merely a few days while he recovered from an illness.

4 January 2010 A professionals’ meeting considers keeping Steven in care longer in order to assess his condition.

22 February 2010 A social worker complains about Steven’s father in an email, saying: “There is always going to be something or other that Mr Neary will bring up” – a comment which the judge said Mark Neary had “done nothing to deserve”.

11 April 2010 Steven escapes from care.

15 April 2010 An order is signed depriving Steven of his liberty, while his father is kept in the dark.

13 May 2010 A judge makes a landmark ruling in favour of The Independent’s legal challenge to attend a separate Court of Protection case.

8 July 2010 Hillingdon Council writes to Mr Neary telling him that his son will not be returning home. He decides to go public on the case.

23 December 2010 Steven’s case goes to court for the first time, where an interim order that he be allowed to go home is subsequently granted.

28 February 2011 A judge rules that the Neary case can be reported by the media for the first time, as Mr Neary describes in court how he felt “powerless” after the council prevented his son’s return home.

9 June 2011 Hillingdon Council apologises to Mark Neary after the court rules that Steven had been illegally detained.

Parents with disability live in fear of losing their children (2015)

December 6, 2018

 

(2015) Parents With Disabilities: These Moms Live In Fear Of Losing Their Kids 

https://www.huffingtonpost.ca/2015/05/10/parents-with-disabilities_n_7251484.html

05/10/2015 10:11 EDT | Updated 05/11/2015 01:59 EDT

Parents With Disabilities: These Moms Live In Fear Of Losing Their Kids

“My kids were fully cared for. There was no danger to them. I did the right thing, but I got screwed.”

Patricia Tomasi  The Huffington Post Canada

 

GETTY IMAGES

Nicole Reid has been battling postpartum anxiety since the birth of her daughter five years ago. The symptoms include panic attacks, heart palpitations, worrying thoughts and insomnia. Her treatment plan includes medication and regular visits to a psychiatrist. Sometimes it takes a few tries to find the right med combinations, but Reid has remained committed to the maintenance of her mental health.

In April 2014, on the third day of starting a new prescription, she began experiencing a depression that left her emotionally and physically unwell. “I was throwing up, sleeping for hours and I’d start crying at the drop of a hat,” she says. “It was scary.”

The stay-at-home mom called her doctor, who told her she was likely experiencing side effects from the new meds. Since he couldn’t fit her in to his schedule immediately to change them, he advised her to go to the emergency room. So Reid and her husband went to their local hospital in Newmarket, Ont., leaving their two children with her brother-in-law.

A hospital crisis worker asked Reid about her medical history and the different kinds of medication she’d taken. She asked the 27-year-old mom about her plan for the care of her children while she dealt with her current situation. Reid told the crisis worker that her husband would care for them, and that she didn’t feel she was a danger to herself or anyone else.

After 10 minutes, the crisis worker ordered Reid to spend 72 hours in the mental health wing of the hospital for further evaluation, and the Children’s Aid Society (CAS) was notified.

“I was distraught,” remembers Reid. “I felt like she rushed to judgment. I felt like the depression and anxiety was clearly my fault because usually CAS only comes when there’s an issue with the family. But there was no issue.”

Reid spent the night at the hospital alone and afraid.

The next day a psychiatrist assessed her, deemed her not to be a threat to her children, changed her medication and Reid was allowed to return home.

When she walked in the door, her husband said CAS had called and would be coming to their home to interview them and their children.

Reid felt horrible. During the first visit, the CAS worker asked if she could speak with her 11-year-old stepson privately. “I wanted to say no,” Reid says, “But the CAS is kind of like the police. What am I going to say?”

Her stepson later told her the CAS worker asked him what Mommy does when she’s sad, whether Reid spent a lot of her time sleeping, if he was happy and if he wanted anything to change.

The worker also asked Reid to sign paperwork allowing CAS to speak with her psychiatrist. “I signed it because I was scared,” says Reid. “I didn’t know my rights.”

Three weeks later, the worker came back to do a follow-up interview. A month after that, Reid received a letter in the mail informing her that the investigation and case had been closed.

Reid isn’t alone in her experience. Disability advocates say mothers with mental and physical disabilities face greater scrutiny and are at higher risk of losing custody of their children than able-bodied mothers. And that possibility instills tremendous fear.

Fighting Stereotypes

Historically, society has been worried about people with disabilities becoming parents. Up until the 1970s, Alberta and B.C. had Sexual Sterilization Acts, under which the provincial governments had the power to force sterilization on targeted groups of people, including those with disabilities.

Even today, disabled mothers are often told that having children will “worsen their conditions, that their disabilities will be passed on to their children, and that they won’t be competent mothers,” says Bonnie Brayton, the executive director of Disabled Women’s Network of Canada (DAWN).

“When I was pregnant, I got a really strong message from my doctor and gynecologist that they didn’t think I should have another child,” recalls Brayton, who has post-polio syndrome.

“In reality, I could have. There was a lot of anxiety that they projected on me that I don’t know in retrospect was appropriate. I terminated the pregnancy.”

When they do have children, “the majority of parents with disabilities have a fear of their children being apprehended, because you know you are being watched — right, wrong or otherwise,” says Melanie Moore, who works with disabled parents at Toronto’s Centre for Independent Living. “Because you have a disability, you are at a greater risk of having CAS called.”

Moore is visually impaired and has a son. When he accidentally burned his hand on the stove (not an uncommon occurrence among kids), she rehearsed what she would say to the doctors and nurses in the taxi on the way to the hospital. She wanted to avoid a potential CAS investigation.

“The attitudinal barriers come from the larger community that think people with disabilities can’t parent,” says Moore. “We can.”

Parenting just looks a little different for those with disabilities. While Moore gets her son ready for school just like everyone else, “the aids that I may use to travel while taking him to school or daycare include: a guide dog or a cane,” she explains. “For myself, in preparing for work, I use a colour detector, which says what colour my clothes are. Some parents however, may need more supports if they have multiple disabilities.”

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Parenting With Disabilities

SEE GALLERY

Rate Of Removal

The federal government doesn’t have a “single, official definition of disability,” but DAWN says a disability includes “mobility, sensory and intellectual or mental impairments, as well as chronic illness, mental health challenges or physical differences that limit functioning.”

According to Statistics Canada, approximately one million Canadians are parents living with mental or physical disabilities, and more than half are moms.

A 2012 report released by the National Council on Disability in the U.S. found that “removal rates” for parents with a psychiatric or intellectual disability were as high as 80 per cent, and parents who are deaf or blind report very high rates of child removal or loss of parenting rights.

“If you find those numbers astounding, I would suggest it’s higher in Canada,” Moore says.

One of the only Canadian reports on the subject was released last fall. It documented the experiences of 25 moms with disabilities, and was published by the West Coast Women’s Legal Education and Action Fund (LEAF).

The report concluded that mothers with a mental health diagnosis in Canada were three times more likely to have been involved with child protection services than mothers without a diagnosis.

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parents disabilities

LEAF launched its investigation following the 2012 case of Maricyl Palisoc and Charles Wilton, an Ontario couple with cerebral palsy. Late in Palisoc’s pregnancy, CAS threatened to remove their baby unless they provided 24-hour care by an “able-bodied attendant.”

Cerebral palsy affects motor skills and speech and CAS workers were concerned over how the parents would physically care for their baby. Friends stepped in to help pay the cost of a full-time caregiver and their son, William, was allowed to stay.

A year later, in 2013, the Toronto Star followed up with the family in their home in an assisted-living facility. They have personal care workers on site around the clock and the couple is able to deal with much of William’s needs on their own.

“We both will help…William deal with whatever comes along as a family,” Palisoc told The Star. “We are not worried.”

The Power Of Fear

Although support services like the ones used by Palisoc and Wilton can help provide relief, the fear of scrutiny can prevent moms with disabilities from accessing the help they need.

“This happens to a lot of disabled mothers,” says Jewelles Smith, a project co-ordinator for DAWN who is based in B.C. “Even if they are struggling, they are afraid to ask for help, because you’re seen as a bad parent failing to meet all the needs of your children and it must be because of your disability.”

Smith, who is now collecting stories of moms with disabilities for her PhD, has post-traumatic stress disorder and spina bifida. When she was working on her master’s degree, stress caused her physical symptoms to flare up, and she was worried about what might happen if she reached out for help. Her sons were eight and 10 at the time.

“When the ministry becomes involved in any way, that’s when a high loss of custody occurs. And regaining custody is almost impossible if you are a disabled mother in Canada,” she says.

Risk Of Custody Loss

Toronto child protection lawyer Tammy Law is currently helping a client fight for custody of her seven-month-old baby. CAS apprehended the baby minutes after she was born in a Toronto hospital last fall.

Law’s client can’t read as a result of a severe cognitive disability. The court decided that places the baby in danger, so Law is working to get CAS and the courts to understand that despite her client’s disability, she is capable of parental care.

“We are getting her in touch with the appropriate support workers, getting the appropriate resources,” says Law, who wonders why CAS didn’t help with this before the baby was born.

Caroline Newton, communications director at the Ontario Association of Children’s Aid Societies, says all parents are asked the same questions during an investigation — regardless of whether they have a disability or not.

“About 90 per cent of the work we do with families and kids involve the child staying in the home. So it could be that as the system or the Children’s Aid Society works through that, they may have questions. They want to connect the mom or dad with local community resources, which might be able to support them in their parenting.

“But, in essence, it’s the same process that we use for all families. It’s based on parental capacity and there is this specific process that is in the eligibility spectrum. We don’t see it as a category of concern.”

Support And Solutions

Advocates disagree. Child protection workers and front-line health care staff must be better educated on how disabilities affect parenting, according to the LEAF report, and the government needs to provide better support services to make sure children can remain with parents with disabilities when its in the best interest of the child.

“Social workers across Canada are not really trained to understand what disabled mothering looks like,” says Smith. “They may not have experienced disability at all.”

Smith believes lawyers and judges also need to be educated on disabled parenting. “Those sorts of people in official positions need a reality check,” she says.

Bonnie Brayton, who heads DAWN, suggests improving support in the early stages as well. “Mothers with disabilities have unique parenting needs, including adapted cribs and change tables for mothers with physical limitations and flashing baby monitors for mothers with hearing impairments,” she says.

Research has shown adaptive baby equipment helps parent-child interaction, but Brayton says it’s not currently funded by the Canadian government. And accessing funded assistance is a separate hurdle. Personal care attendants are barred from helping disabled parents with their childcare tasks, so parents in need must apply for these services separately.

“Instead of a system supporting the most vulnerable mother who needs the additional support, she’s instead being made to constantly try to prove she can be a mother,” says Brayton.

Reid thought she was being a responsible parent by going to the emergency room. Six months after she filed a complaint with the hospital that called CAS, she received an apology. “The hospital would not issue anything in writing, which was frustrating,” says Reid. “All I got was: ‘I’m sorry this happened, but that’s our job.'”

“All I wanted was a fix to my meds. My kids were fully cared for. There was no danger to them. I did the right thing, but I got screwed.”

Patricia Tomasi  The Huffington Post Canada

Caring for children with severe disabilities financially devastates families

November 29, 2018

Caring for children with severe disabilities financially devastates Tennessee families

https://www.tennessean.com/story/news/2018/11/26/children-disabilities-costs-medicaid-tennessee-tenncare-katie-beckett-tefra/1924986002/

JESSICA BLISS  |  NASHVILLE TENNESSEAN Updated 8:41 a.m. MST Nov. 27, 2018

Middle Tennessee family raising daughter with severe disabilities struggles to afford care

The Kauffmann family talks about caring for their daughter

First, Rondi Kauffmann heard her baby cough in the back seat.

Then she heard the little girl start to choke.

That’s when she started to panic. Kauffmann sped into a gas station parking lot and grabbed 6-month-old Adelaide out of the car.

The baby’s eyes were glassy and unresponsive. She was not breathing.

Without another adult there to help, Kauffmann shoved her cellphone into her 7-year-old’s hands with the instruction to call 911. Then she yanked a terrified college kid out his white Altima at the gas pump and told him to talk to the emergency operator.

She administered rescue breaths on her baby until the paramedics arrived.

When they did, she was forced to put Adelaide in the ambulance alone with the paramedic and follow behind in her car.

It never should have unfolded that way, Kauffmann says. If the family had a private-duty nurse, then Adelaide — who was born with debilitating spinal muscular atrophy — would never be without a dedicated adult to respond to her medical emergencies.

But, despite Adelaide’s extraordinary needs, the little girl can’t qualify for TennCare support. The Kauffmanns are a middle-class family. Their household income is too high.

In Tennessee, nearly all children with severe disabilities who come from middle- and high-income families do not qualify for the state’s Medicaid program.

As a result, many parents shoulder the burden of thousands of dollars in medical bills for the therapies and vital equipment that private insurance does not cover. Others simply cannot provide their children the care they need because the cost is too much and the state will not help.

A pathway to a solution

Many states across the country have a solution for these families.

It comes in the form of a broad program created in honor of a young girl named Katie Beckett, who contracted a brain infection at 5 months old and suffered paralysis that left her unable to breathe or swallow without the assistance of a ventilator.

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Beckett spent three years in the hospital, but when she was finally ready to return home to the care of her parents, her family had reached its $1 million private insurance cap and the little girl faced the reality of losing the Medicaid coverage that supported her medical needs only if she lived in an institution or nursing home.

In 1981, President Ronald Reagan’s administration took interest in Beckett’s story and implemented a program in her name that allowed the girl to go home to her family’s care and retain her Medicaid coverage so her medical expenses would not bankrupt her parents.

Beckett lived to be 34 years old, and in her obituary in 2012, The New York Times called Beckett “the inspiration for regulations that have allowed more than 500,000 disabled children to live at home since 1981.”

In the years since then, nearly every state in the country has adopted some version of the Katie Beckett program or a similar eligibility option known as TEFRA, according to the Kaiser Family Foundation.

Tennessee has not.

“I can say with confidence there is no program in Tennessee designed as a pathway to the Medicaid program for children with long-term disabilities or complex medical needs,” said Sarah Sampson, deputy director of the Tennessee Disability Coalition.

‘It’s not safe to leave her side’

The Kauffmanns’ Dickson County farm home looks like a modified intensive care unit, with machines whirring and monitoring their daughter’s every vital sign.

Little Adelaide, a girl with silky tufts of red hair and big eyes, lies on her stomach in the middle of their living room reaching for a row of beads on a stick in front of her.

It’s therapy time for the 1-year-old, whose rare genetic disorder caused her muscles to begin atrophying just weeks after she was born, making it difficult for her to move or swallow.

With her parents smiling and cheering beside her, Adelaide practices a new trick, lifting her hips off the ground ever so slightly. Her dad, Adam, puts on a music playlist featuring Michael Jackson to get her in the mood.

Every once in a while, one of the flashing monitors attached by wires to Adelaide’s body will beep, indicating her heart rate is dropping. Adam Kauffmann will calmly pick up his little girl, clear her airways with a suction tube, and then lie her back down.

It seems nerve wracking, but this is nothing compared to when Adelaide is really sick, her parents say.

When she got a cold at just 6 months old, what would have been a few sniffles for most people was enough to put her in the ICU for days. When she was discharged, one of her parents had to be awake and at her bedside 24 hours a day to keep her alive.

At the height of their fear, Rondi and Adam Kauffmann worried every second that their daughter would stop breathing.

Without a home nurse to help, the Kauffmanns shared overnight shifts, staying up three hours at a time, suctioning mucus from her nose and throat and using a machine to help her cough and keep her airways clear.

In the mornings, when Rondi Kauffmann would go to work as a surgeon at Vanderbilt University Medical Center, Adam would be home all day facing that same level of intensity while caring for his daughter alone.

Always afraid to leave her side.

“There were days when she was sick that I was literally praying ‘Dear Lord, don’t let my child stop breathing while I’m using the bathroom,’ ” says Adam Kauffmann, a former Army helicopter pilot who now serves as Adelaide’s primary caregiver.

“It’s constant. There’s no break at all. And it’s not safe to leave her side.

“That shouldn’t be that way.”

What should happen, the Kauffmanns say, is that an in-home nurse should assist. Someone who can make sure Adelaide doesn’t stop breathing while her parents sleep at night and who can sit next to her in the back seat of the car monitoring her heart rate when they drive to her many doctors’ appointments.

The Kauffmanns’ private insurance won’t cover an in-home nurse, and — with three kids at home and only one working parent — the family can’t afford one on their own. Hiring someone to work even just five nights a week would cost $150,000 a year, they say.

A road map and state resources

Medicaid is the primary source of coverage for people of all ages with severe disabilities — in Tennessee, that coverage is known as TennCare.

In 2016, TennCare closed enrollment to three Home and Community-Based Services waivers offering programs for those with disabilities. It shifted focus instead to a new long-term services program for people with intellectual and developmental disabilities called Employment and Community First CHOICES.

Within that program there is one benefit group, Essential Family Supports (sometimes called CHOICES Group 4), that was created specifically for families caring at home for a child under the age of 21 who has an intellectual or developmental disability.

It was meant to serve as Tennessee’s version of the Katie Beckett option.

“The 1915-c Home and Community-based waivers for a long time allowed children to qualify without counting parents’ income,” said Patti Killingsworth, assistant commissioner and chief of long-term services and supports for TennCare.

“In the ECF CHOICES program, we do the exact same thing … when a child needs a certain level of care.”

Disability advocates, however, say the limitations of the CHOICES program are many — and it does not offer the same inclusionary coverage that a Katie Beckett option would.

To begin with, Sampson said, the intent of the CHOICES program as laid out by the TennCare Bureau is “to create a road map that will help individuals with intellectual and other developmental disabilities achieve their employment goals.”

Enrollment priority is given to those people with disabilities who need support to keep a job, who are about to finish school and need help to get a job, or who want to get a new job.

“That is very different than a program that would be designed to help children with complex medical needs access health care,” Sampson said.

Additionally, state funding is enough to support only 3,000 children within the Essential Family Supports benefit group.

The program is currently full, Killingsworth said, except for spots reserved for families who are struggling to meet a child’s care requirements at home and are concerned about the sustainability of that living arrangement.

“Not every child who has medical needs would meet that criteria,” she said.

“Not to underplay the demands on families, but many families are able to meet that burden. They have private insurance, they may have income and family to help them. They have lots of resources that come to bear.”

Those resources penalize thousands of children across the state, disability advocates say, because their parents make enough money to put a roof over their heads but often not enough to support the costs of their severe, sometimes life-threatening, developmental disabilities.

Small blessings but still no help

The Kauffmanns do have many reasons to count their blessings.

As a surgeon specializing in breast cancer at Vanderbilt, Rondi Kauffmann has emergency training most parents do not, though she certainly was not taught how to handle the full-time needs of her daughter in medical school.

Adelaide also has a new medicine, which is helping her muscles get stronger. Before it came on the market, Adam Kauffmann says most babies with Adelaide’s condition weren’t expected to live past their first birthday.

And Rondi Kauffmann’s primary insurance has been very good about covering all of her daughter’s hospitalizations, treatments and necessary equipment.

But it does have a specific exclusion in the policy — it will not provide home, private-duty nursing care.

The Kauffmanns say they have tried every venue they can: federal Supplemental Security Income (SSI), the state’s Employment and Community First CHOICES program, appeals to their insurance company and going directly to TennCare.

No one will help.

“And the reason is,” Adam says, “Rondi has a job.”

The only program that covers private-duty nursing for children is Medicaid, or TennCare in Tennessee, and that’s what they cannot get because they don’t meet the household income requirements, which much be less than $2,250 per month.

“That is actually a very modest income level,” Rondi Kauffmann says. “So it’s not just us that’s excluded. It’s basically anyone who had a professional full-time job.”

Across the state, other families raising children with severe disabilities can commiserate.

In West Tennessee, Jennifer Austin and her husband incurred $4 million in medical expenses during the first year of their daughter’s life because they were told not to apply for TennCare to support their now 19-month-old child with Trisomy 18.

On the east side of the state, Sean and Jessica Fox — both full-time working parents with employer-based health insurance — spend hundreds of dollars a month on feeding tube supplies and copays for the more than 19 health care providers their 4-year-old daughter, Claire, sees.

Claire Fox was born with Cri du chat, a chromosomal deficiency that caused multiple dangerous heart deformities and has required continuous care from the day she was born.

She received TennCare coverage until just before her second birthday, when, her mom says, the family was notified the coverage would be terminated “because we were ‘over the maximum income allowance.’ ”

“This is a path these kids didn’t choose,” Jessica Fox says. “My family didn’t choose this. We did everything right.

“There has to be a workable solution for working families.

“We have nowhere to go. We are out of options.”

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Taking off a ‘tremendous burden’

Ascertaining exactly how many of the approximately 1.5 million children in Tennessee may be eligible for a Katie Beckett or TEFRA program is difficult.

Advocates and state agencies struggle to determine even how many children with intellectual and developmental disabilities there are in the state. The best estimate comes from data collected through the federal Individuals with Disabilities Education Act (IDEA), which ensures services for children with disabilities throughout the country.

That program served 128,936 children ages 3 to 21 in Tennessee during the 2016-2017 school year.

But only a small percentage of those children would meet the Katie Beckett standards.

To be eligible they would currently not be covered by TennCare and they would have developmental disabilities severe enough to necessitate the high level of specialized care typically provided in a hospital, skilled nursing facility or intermediate care facility.

The Tennessee Disability Coalition estimates that between 1,200 and 3,900 children in the state may be eligible for a Katie Beckett-type program under those stipulations.

“We want kids who need care to get the care they need regardless of parent income,” Sampson said, “and if they can, that takes a tremendous burden off the whole family and the entire family can benefit.”

3 extreme options

Without a Katie Beckett-type program in Tennessee, the Kauffmanns have been told they have three options to get coverage for the nursing care their daughter needs.

First, they could get a divorce. Adam Kauffmann could remain Adelaide’s primary stay-at-home caregiver. He could rent an apartment and move with Adelaide down the road. Without income, they would qualify for TennCare.

Or, Rondi Kauffmann could quit her job. The family could give up their sole source of income and the insurance coverage they do have, empty their savings accounts and live destitute. They also would qualify for TennCare that way.

Or, they could move to another state.

They haven’t ruled out that last option, but they love their land in Tennessee where Adam Kauffman hopes one day to have a small sustainable farm to sell homegrown healthy food to the neighbors and to feed his own children.

A place where his kids, especially his little Adelaide, can play — maybe with a home nurse by her side.

Reach Jessica Bliss at jbliss@tennessean.com or 615-259-8253 and on Twitter @jlbliss.

What is Katie Beckett or TEFRA option?

It is an eligibility pathway for the Medicaid program given to certain children who have long-term disabilities or complex medical needs and live at home. It allows children to receive Medicaid coverage for services like therapies and nursing care without being excluded because a family’s household income is too high.

Why it is needed?

The specialized and intensive services needed by children with long-term disabilities often are not available through private insurance. That results in high out-of-pocket expenses that can deplete a family’s resources — or result in lack of important medical interventions and care.

What would it mean for Tennessee?

It would provide families currently excluded from TennCare coverage because of income a pathway to coverage for therapies and nursing support that could help their children with severe disabilities survive and thrive.

Will both of you Ministers be proud of what you have accomplished? Will your cabinet be proud? How many people do you plan to hurt? How much treatment to you plan to deny? How many lives to you plan to ruin? Is there a point where it is all worth it? Are tax cuts worth my son’s life? His future? Your “new era” means that I actually have to ask these questions. Your “new era” is nothing short of immoral. If you allow it to continue unchecked, so too are both of you. Rachel Notley

November 6, 2018

https://featbc.org/discussions-board/reply/2659/


Lou Arab

Member

Dear FEAT Members,

My wife wrote an excellent letter to Gordon Hogg and Christy Clark, with copies to all the MLAs and the media. I want to share it here. In another posting, I will post the unbelieveable response from one Liberal MLA.

Lou Arab (Ethan’s Dad)

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I am the mother of a beautiful blonde three year old boy. I want you to imagine yourself , going through what I have gone through in the last two and a half years.

You wake up every morning and hug your six month old baby. You marvel at his beauty. You make plans for his future. You bask in his smile. You take your baby to a place with one or two other children the same age. You stand back and smile as they crawl around and over eachother, exploring, playing. He looks back at you with a smile, just to check that you’re still there. You’re so proud. A few months later, it’s his first birthday party. Your baby’s beauty has increased tenfold. You didn’t think it was possible. Two of the other babies there are walking. They laugh and look at eachother. A third one, not quite walking, declares “mama!” and crawls toward her mother. Your baby stares into space, lost in thought. The birthday cake arrives. Your baby desolves into frightened tears. The cake is taken away. You try to interest your baby in the other children. The tears increase. A bad day you think to yourself. You feel your throat tighten. Six months later. Still no words from your child. He’s just started to walk. You’ve been to see your family doctor. “Everyone develops at their own pace” you’re told. You demand an appointment with another doctor. An eyebrow is raised. You’re told to come back in another six months. A speech therapist tells you that your baby is “a little behind”. You go back to your doctor. You demand a referral, and then another. You are desperate. Finally after six months of telling you that “there’s nothing to worry about”, suddenly the collective opinion changes. You are told that you child is “probably autistic”. You’re forced to wait another six months to get the “formal” diagnosis. You need that so that you can get help for your child. You grieve. You cry. You don’t sleep. Your beautiful child continues on, unsuspecting, in his world. You cry some more…alot more. Then you “get busy”. Something must be done. You read everything you can find. You discover that something CAN be done. You hear that the new government promised treatment. The deputy premier, a new mother herself, personally made a public promise during the campaign. You thank God for your timing. You feel bad for those parents that came before you whose children were not able to get the treatment you’ve been promised. You wait. Two months, four months…the treatment gets put off again, and again. It will be coming soon you’re told. Then you are told that “a 30% cut will be made to the budget”. Tax breaks were more important. You look over at your beautiful child, just turned 3 years old. He looks up, he smiles. He returns to his odd little routine. He has no treatment.

Tax breaks are not more important. Anyone who says they are is immoral. They deserve to go through what we have gone through.

They probably won’t. Only 1 in 160 are autistic. The odds are on your side Christy. Do you deserve to enjoy the benefits of those odds? If it were just you, I would not be so sure. But your child has done nothing wrong. So your baby deserves to be healthy.

Will both of you Ministers be proud of what you have accomplished? Will your cabinet be proud? How many people do you plan to hurt? How much treatment to you plan to deny? How many lives to you plan to ruin? Is there a point where it is all worth it? Are tax cuts worth my son’s life? His future?

Your “new era” means that I actually have to ask these questions. Your “new era” is nothing short of immoral. If you allow it to continue unchecked, so too are both of you.

Rachel Notley