We\’d like to introduce everyone across our community to our new HR Assistant, Karen Jorgenson. Karen will be working with Pete Stone as an important member of the Human Resources (HR) team, helping Pete with our HR processes and procedures.

Karen is originally from Vancouver and completed a Bachelor\’s degree at Simon Fraser University with a major in Communications and minor in Publishing. She has a range of experience in working in administrative and communication roles in the health care and finance industries in Vancouver and Toronto.

Karen started with CVS this past week on Wednesday, January 2nd. We welcome Karen\’s experience and are excited to have her as part of CVS. Please join us in welcoming her!

To kick off the New Year, we thought this story by Jennifer Overton was an inspirational one. It discusses her own experience with her son Nicholas who was diagnosed with autism at the age of three.

It takes us through the journey since Nicholas\’ diagnosis and how this changed her own approach to life. Overall, it made her a lot more calculated and as she puts it \”a card-carrying control freak\”. As her son grew up, she worked out plans of what would be best for him as an adult with autism. However, Nicolas\’ journey would end up different than Jennifer had planned.

In the end, giving her son the opportunity to exercise his own independence helped him grow as a person and it appears to have started a whole new chapter in Jennifer\’s life as well.

We would definitely suggest taking the time to read this article as it offers a genuine perspective from a parent\’s point of view. To read the complete article, click here.

An article published by the CBC highlighted that it is alleged that children and adults who lived at a provincially operated institution for Manitobans with intellectual disabilities suffered regular sexual and physical abuse for decades. Now, a $50-million lawsuit is being brought forth to the court against the province.

The claims include allegations that staff at the Manitoba Developmental Centre in Portage la Prairie, Manitoba beat residents, as well as allegations of resident-on-resident rape, food deprivation and the use of nudity as punishment.

The lawsuit, filed October 31st, has yet to be certified as a class action by a judge. It\’s intended to cover all living or recently living residents of the Manitoba Developmental Centre admitted after July 1, 1951.

David Weremy, a representative plaintiff in the lawsuit, says he experienced years of trauma at the facility, which included sexual abuse, physical assault and being confined naked in a room.

None of the claims have been proven in court.

A spokesperson for the Manitoba Justice Department said its lawyers have reviewed the statement of claim. The province declined to comment about the case because it is before the courts.

The Manitoba government has until January 29th, 2019, to file a statement of defence. Along with $50 million in punitive damages, the lawsuit seeks an admission from the province it was negligent in the operation, management and supervision of the Manitoba Developmental Centre.

\”People simply, at no point in time, at any point in the years past, should ever be living in these circumstances. Period,\” said Weremy\’s lawyer, David Rosenfeld, a partner with Toronto-based firm Koskie Minsky. The firm has represented other class actions against institutions, including one against the Huronia Regional Centre in Ontario, which led to a $35-million settlement.

The Manitoba Developmental Centre, which first opened in 1890, remains an active long-term care facility for more than 100 residents with intellectual disabilities. The 2018 operating budget for the facility is $29 million.

In the 1960s and 1970s, around 1,200 people lived at MDC. The numbers began to rapidly decline in the 1980s under Manitoba\’s Welcome Home initiative, which sought to help people with disabilities integrate back into the community. Today, the sprawling campus in the north end of Portage la Prairie — a small city about 85 kilometres west of Winnipeg — includes several multi-storey brick buildings, basketball hoops and shaded, outdoor picnic areas.

CBC asked for a tour of the facility but the province declined the request, to \”respect the privacy of our residents.\”

People First of Canada, a group that advocates for people with intellectual disabilities, has been campaigning for the closure of Manitoba Developmental Centre for nearly 30 years.

The allegations include physical and sexual abuse as well as starvation, the lawsuit alleges. ​Weremy said he and other residents were routinely underfed, especially at dinner time.

To read the full article, please click here. Community Ventures Society will follow this story closely as the lawsuit and investigation develops.

An interesting article about Tristan Lederman, a man born hydrocephalic who had cerebral palsy. He could not see, walk or do anything for himself, relying on his parents and at-home caregivers for all his needs.

However, like a lot of other young adults with extraordinary medical needs, his health took a turn last year. He developed rashes and suffered seizures. He wasn\’t eating and drinking. He slept more during the day and went to bed early in the evenings.

Tristan\’s mother said she\’d repeatedly tell the family doctor her son was constantly moaning and in pain. His mother noted that, \”I think Tristan was trying to tell us that he was on his way out,\” said Jenn Lederman. \”Tristan never cried but he … sometimes just burst into tears. I think he was very aware that he was going.\”

The Ledermans say they believed their 34-year-old son was dying, but the doctors wouldn\’t provide a diagnosis or prognosis. They say the doctors provided inadequate at-home palliative care to manage their son\’s pain right until his death on Oct. 8, 2017.

Tristan\’s case doesn\’t surprise advocates and experts who say his case illustrates some of the failures in both the health-care and education systems, which haven\’t prepared doctors, nurses and health-care professionals to care for severely disabled patients at the end of their lives.

By the time the family doctor agreed in late August 2017 that Tristan was dying, he brought in doctors who specialize in at-home palliative care. Their additional efforts to manage the pain, however, also failed, until a pain pump, which could have controlled his pain more closely, arrived shortly before his death.

Kyle Sue, a B.C. physician who works in both adult and pediatric palliative care, said Tristan\’s case is \”very symbolic and actually more common than any of us would like.\”

In the past, patients with severe developmental disabilities did not live to middle age, and were often institutionalized. Now that health care has improved, many like Tristan are living longer than ever before in their own communities. But doctors don\’t tend to see these patients in their practice and only some schools have adapted their core curriculums to include end-of-life care for patients with disabilities.

Canada is lagging behind other Western countries when it comes to palliative care for adults with severe disabilities, Sue said.

The United Kingdom has teams that are specifically trained in palliative care for adults with developmental disabilities. And they have outreach programs that spread to more rural places.

In May, the Ledermans filed a complaint with Ontario\’s College of Physicians and Surgeons — part of which deals with Tristan\’s doctors. The physicians have filed responses, but a decision by the college isn\’t expected for months.

The Ledermans are also lobbying the premier and health minister in an effort to improve palliative care at home for people with exceptional medical needs.

This is an interesting case to watch so we can see if there is any change in Ontario and if that will filter out to other parts of Canada, including here in B.C.

Global News reported that B.C. Children’s Hospital says it is working to meet a key recommendation made by B.C.’s Representative for Children and Youth when it comes to autism assessment waits in the province.

The report Alone And Afraid, about an Aboriginal boy with autism, recommended that autism assessment wait lists be reduced to 12 weeks by the year 2021.

Right now, 2,800 children in B.C. are waiting to be assessed, and the wait times are lengthy, averaging 55 weeks. In the Northern Health Region, the average wait is 62 weeks.

B.C. Children’s Hospital oversees assessments in the province.

Following the report, the province’s advocate for Children and Youth is also recommending Health and the Ministry of Children & Family Development (MCFD) work collaboratively to develop a plan to ensure early identification, timely assessment and appropriate supports for children under six with signs of developmental delay and develop a protocol with the Ministry of Education to address chronic, unexplained school absences.

A number of national newspapers published stories last week highlighting the holes in current funding for the B.C. child welfare system.

CBC News noted that advocates are stating the system has become \”dysfunctional\” and in many cases has led to the neglect of children with disabilities.  B.C. child welfare advocates argue fundamental changes are needed to improve access for children with special needs.

A report highlighting how the system failed a boy given the pseudonym \”Charlie\” was released earlier this week by B.C.\’s representative for children and youth. The report details how the boy experienced years of neglect, malnutrition and a lack of support for managing autism spectrum disorder. The saddest part of this was that nothing in the report was surprising and neither were the recommendations, according to the Executive Director of Autism Community Training (ACT), Deborah Pugh.

The Ministry of Children and Family Development became aware of \”Charlie\” in 2006 while he was living with his single mother who was struggling with substance abuse. Ten years on, in January 2016, the 12-year-old was found naked, filthy, unable to walk and weighing 66 pounds.

Pugh said situations like this case where families, particularly single parents who have high-needs children living in poverty, are not provided with robust support or active engagement are all too common. Often, she said, it\’s due to a lack of communication between social workers for children with special needs and child protection social workers. In the case of \”Charlie,\” no child protection social worker ever laid eyes on the boy, despite four separate child assessment reports by the ministry. This type of situation points to a larger flaw of the system, according to Pugh.

Children with special needs are often pushed under the umbrella of child protection services but, Pugh said, an engaged family that\’s desperate to help their special needs child is seen as less of a priority than a child that\’s in immediate danger.

The Globe & Mail highlighted that Jennifer Charlesworth said social workers failed to comply with basic standards when responding to reports. She found that between 2006 and 2016, a range of professionals including police, doctors, income assistance workers and school staff contacted the provincial Ministry of Children and Family Development (MCFD) to report a child protection concern.

The report said social workers were told Charlie appeared malnourished, that there were concerns he wasn’t accessing adequate medical care, that he had stopped attending school and that his mother’s mental health appeared to be deteriorating. Katrine Conroy, the Minister of Children and Family Development, called the behaviour of the workers responsible for the case “inexcusable.”

Charlie was taken into provincial care on Jan. 20, 2016, after police came to his mother’s home. Officers found there were no adults present and he had been screaming for half an hour, according to the report.

Charlie is now thriving in specialized foster care and back in school, Ms. Charlesworth said. But Ms. Charlesworth said the situation goes beyond individual workers. She said the fact no social worker ever saw or met Charlie is representative of systemic pressure social workers are under to do superficial and speedy investigations.

She made several recommendations to the government, including that MCFD should “ensure social workers lay eyes on children and adhere to timelines during child protection responses” and “ensure identification and involvement of an Indigenous child’s family, community and culture is made at first point of contact.”

Mary Ellen Turpel-Lafond, who left the position she’d held for a decade two years ago and now teaches law at the University of British Columbia, authored three reports dating back to 2011 raising concerns that children who were the subject of child protection complaints were never seen by ministry social workers. All three related to children with complex needs, and two were Indigenous.

Community Ventures Society full supports the recommendations and funding reforms addressed by Ms. Charlesworth. We hope that these recommendations are integrated into the system and we see an improvement in the near future.

Disability Alliance BC recently sent a communication out to its partners highlighting that, effective December 1, 2018, the province of BC has introduced several positive changes to Crisis Supplements for people in receipt of Income Assistance, the Persons with Disabilities (PWD) benefit, and the Persons with Persistent Multiple Barriers to Employment (PPMB) benefit.

The changes are:

• The maximum monthly supplement available per person for food has increased from $20 to $40; and
• There is no longer an annual maximum cap on the amount of Crisis Supplements an individual is eligible to receive. The maximum monthly Crisis Supplement for food and shelter and the maximum annual Crisis Supplement for clothing remains in place.

To qualify, a family in receipt of Income Assistance, PWD or PPMB must demonstrate:

• It is needed to meet an unexpected expense or obtain an item unexpectedly needed;
• There are no resources available to meet the expense; and
• Failure to meet the expense would result in imminent danger to the physical health of a person in the family or the removal of a child under the Child, Family and Community Service Act.

Crisis Supplements are not available to cover the costs of any healthcare goods or services.

Disability Alliance BC noted that it acknowledged \”that these improvements to the Crisis Supplement were much needed and represent a positive step forward\”. It also highlighted that there was still a concern that the monthly and annual limits for Crisis Supplements for food, shelter, and clothing remain too low considering the rising costs of living across BC. Robust supports during crises for people living in poverty are a critical component of any effective poverty reduction strategy. As such, we strongly encourage government to take additional measures to protect the safety and well-being of vulnerable people in BC.