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Nathan Shipley’s Really Lousy Gap Year

People with severe disabilities face abrupt cut-off of services at 18. That needs to change, say rights advocates.

By Aryn Strickland 21 Jan 2019 | TheTyee.ca

Multimedia journalist Aryn Strickland, whose work has appeared on CBC, Vancouver Magazine, Huffington Post and The Guardian, reports for the Wellington Advertiser in Ontario.

Nathan Shipley isn’t all that into parties, but his nineteenth birthday was different. It wasn’t just that he had graduated from high school, or that he could now legally go to a nightclub or drink a beer. He had made it through a year without nursing support for his severe physical disability.

As family and close friends clapped and cheered, he drove his wheelchair through the wrought-iron gate of his grandparents’ front garden in White Rock, British Columbia. White and black balloons squeaked against each other in the summer breeze. It was as though he was crossing a finish line.

Nathan has quadriplegia cerebral palsy, or CP. It’s a neurological disorder caused by brain damage during or in the first few years after birth. In Nathan’s case, it was caused by a stroke he suffered while still in the womb. His CP has affected his ability to control his limbs; it also weakened his eyesight and made him painfully sensitive to sound, to the point that he wears white-noise devices in his ears to lessen the din around him.

He spends most of his waking hours clipped in at the chest to a motorized wheelchair, which he manoeuvres using a joystick affixed to his left armrest. Growing up Nathan enjoyed dragging his younger brother and cousins behind him on toboggans.

The provincial government provides full medical benefits and home nursing to youths with severe disabilities until the last day of the month of their eighteenth birthdays. They then face a void in health services that at best lasts a year and at worst lasts a lifetime.

To Nathan and his family, this void is known as “the gap.” To senior program coordinator for the CP Association of BC Jeanne Morton, it’s “a cliff.”

Nathan’s story is an all too familiar example of the struggle to achieve an appropriate standard of living for people with disabilities in British Columbia.

“The public has a general idea that if I’m very disabled, I am going to be looked after at some level. The fact is there really is no established level of civil rights to a certain amount of care,” Morton explained.

“The CP didn’t stop,” says Nathan, who is now 23 years old. “So why did the funding stop?”

That question is behind a campaign to change regulations in B.C., and a human rights complaint in Manitoba based on the claim that young adults like Nathan Shipley are being discriminated against on the basis of age.

‘Aging out’ of basic services at 18

The funding and support models that exist for people with disabilities today have roots in the 1980s.

By 1989, the primary support system for children and youth with disabilities, the At Home Program through the Ministry of Child and Family Development, was in place. It offers subsidies for at-home care workers, medical devices, physiotherapy and learning support at school. From 2016 to 2017 the program had a total budget of $24 million to provide services for approximately 3,883 children and youth.

The Shipleys started receiving funding from the Ministry of Child and Family Development before Nathan’s first birthday. By his teenage years he had a meticulous routine. Home support workers would come through a side entrance of the Shipleys’ home and into Nathan’s room each morning and help him with what is known in the healthcare field as activities of daily living: positioning him in his chair, and helping him wash and toilet, eat and change.

At school, he had learning assistants and occupational therapists to help him in class. He had massage therapy and scheduled appointments with his physiotherapist three or four-times-a-month.

When Nathan drove his wheelchair home from school, support workers would help him do his homework, and in the evening would assist as he ate and went to bed. All of the funding for the home support was covered by the At Home program.

But as Nathan got closer to 18, the Shipleys began to hear whispers about a year-long gap in the funding.

Both Leora and Peter Shipley work within the disability field — Leora with infants and Peter with adults.

They were better equipped than most parents to advocate for the best possible funding. “I am lucky that my parents know the system and they push. For someone who doesn’t know, they get stuck,” Nathan says.

No one seemed able to tell them what the transition out of the child system would look like. They began to worry. “We tried contacting Nathan’s social worker,” recalls his mother Leora. “They said, ‘I don’t know what’s there for you.’”

Frustrated, Peter reached out to the regional Fraser Health authority. They assured him that Nathan would be eligible for a program called Choice in Supports for Independent Living, or CSIL, which provides people like Nathan with a lump sum of money to hire their own home-support staff. It was exactly what the Shipleys would need after Nathan turned 18 and the youth program ended. Unfortunately, Nathan had to be 19 before it would start.

Months went by while Peter went from one government contact to another, frantically trying to convince someone that Nathan needed to be let into CSIL early. Instead he was stymied at every turn. “There was no solution,” Peter says.

After Nathan turned 18, the At Home program allowed for a single benefit, “respite.” It amounted to $188 per month to pay a nurse to give Leora and Peter, a short break such as a date night or a one-day vacation. It offered little consolation to the Shipleys struggling to take on what is a full-time job helping Nathan.

‘They are trying to put pressure on the family’

Many of the approximately 100,000 people in British Columbia over the age of 18 on provincial disability assistance face similar struggles.

When an individual with a severe disability ages out of the At Home Program it is left up to their health authority to determine how many hours of support they will receive through third party agencies.

“If you have a young adult still living with their parents, the health authority looks to every other option of help for you other than them paying... They are trying to put the pressure on the family to be providing that care rather than they pay,” Morton said.

That is why families like the Shipleys experience a complete void in service, receiving no funding or support for activities of daily living.

“It’s a very highly stressful time for families because if your son or daughter has been in school, they have support before and after school care and now all of a sudden you are expected to do it all because they are an adult. How do you retain your income?” Morton asked.

582px version of Paul-Caune.jpg
Vancouver-based Paul Caune founded Civil Rights Now to change ‘cruel and shortsighted’ disability regulations. His group wants individuals to be able to decide how to spend their health care funding, and an independent body to investigate disabled rights abuses. Photo: Disability Voice.

For those who do not live at home and are not eligible for the CSIL program the health authority Morton said, will intervene. However, the services provided, in her experience, are “bare-bone.”

Typically, the health authority will provide nurses to help with positioning, bathing, toileting and feeding for 45 minutes in the morning and 45 minutes in the evening.

The amount of time varies between health authorities and individual cases. Most health authorities will provide third-party care for up to four hours a day.

In all cases other daily necessities that non-disabled individuals take for granted are not provided.

“Things that aren’t included are doing your laundry. They might warm up a meal for you but they are not going to be cooking for you. They are not going to clean up the kitchen,” said Morton.

Locked in a cage to protest

Because of his summer birthday, Nathan went to school for an extra year which meant neither of his parents had to take a leave of absence from their job.

When he was 19, Nathan started the CSIL program. Although 19 is the minimal age requirement, very few people are given the chance to start the program right away.

The expectations placed on an individual in the CSIL program are similar to running a small business. A CSIL “employer” has to be able to administer pay roll deductions and all of the taxations and work safety fees for their nurses and support staff who take care of them.

Often, individuals are found unable to handle such responsibilities right when they turn 19. In that case, they rely on the amount of third party care decided on by their health authority case worker.

“Without the CSIL, they will come in, get you dressed, use the washroom, and you are left sitting on the couch at home,” said Morton.

According to founder of Civil Rights Now Paul Caune, third party support workers are given a list of activities from their managers — like helping to take out the trash — that they are not to perform while helping with activities of daily living.

Both Morton and Caune said those relying on the health authority are commonly not bathed more than once a week to cut time and save money.

“It is incredibly cruel and short-sighted,” Caune said of the regulations.

Caune started the registered non-partisan organization Civil Rights Now in 2010 to advocate for new legislation in B.C. in two areas.

The first is to make individualized funding an option outside of programs like CSIL that would allow individuals the right to use funding for healthcare at their own discretion. The second is to establish an independent body to investigate disabled rights abuse claims.

Over the past nine years, Caune says the organization has spoken to B.C.’s Liberal and NDP governments but it is no closer to reaching its goals.

“I think we haven’t gotten close to our goals because our ideas are not what the Liberals and NDP think is best,” Caune said, adding that in most areas regarding disability rights the parties’ ideas are “old fashioned and out of touch.”

Health Minister Adrian Dix did not respond to The Tyee’s questions about gaps in services.

Disability-Cage.jpg
In June, Tyson Sylvester, A 22-year-old with cerebral palsy, locked himself in a cage in Winnipeg to bring attention to the age-based human rights complaint he co-filed with Amy Hampton. Photo: Change.org

British Columbia is not the only province to lack a standard of living for people with disabilities. While funding programs differ between provinces, all provinces supply inadequate services.

“Some provinces will be a little bit better in one aspect than in another but generally speaking across the board our supports are inadequate,” said Morton.

In Manitoba, Tyson Sylvester and Amy Hampton filed a Manitoba Human Rights complaint in July 2016. They argue that being denied access to the same level of disability support at 18 equates to age discrimination. In June, Sylvester, who is 22, blind and lives with cerebral palsy, locked himself in a cage in his wheelchair in a Winnipeg public square to protest the downgrading of his support and bring attention to the impending human rights decision.

Both Caune and Morton are hopeful more exposure to the issue will help spread awareness across the country.

“We are a first world country that won’t pay for an individual with a disability to be bathed more than once a week,” said Caune.

At 23, Nathan Shipley manages his own support staff to help him at home. He spends his time volunteering at an old age home and is looking to start a work training and placement program through Service Canada in the spring.

However, he continues to rely on his parents for emotional and physical support.

“What I am concerned about... is when my parents get older and eventually pass away,” he said. “You have to insist for funding, you have to fight for it but you shouldn’t have to.”  [Tyee]

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