19 and nowhere to go

Adults with disabilities face limited options once school is done

"MY son isn't able to talk, but I know how to speak up for my son because he gave me the voice to do that."

North Vancouver resident Cheryl Baker's son Calvin Jr. has cerebral palsy and a complex seizure condition. When he was eight years old he had 33 seizures in one day. When he was 16 he underwent brain surgery to help alleviate his seizure condition. He is unable to talk, he cannot walk and he has minimal functionality on the right side of his body.

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He is 22 years old. He receives $233 a month from Community Living British Columbia, a provincial agency responsible to the Ministry of Social Housing and Development.

"My son is a fighter. He is a very strong person and I really admire his strength in all of the obstacles he has faced. What I've had to go through is nothing in comparison," Baker says.

"You'll find that parents will speak up really strongly for their children, and how powerful they are, and how hard they've had to work just to live.

"CLBC doesn't get that, and neither does this ministry." Like many residents on the North Shore, and throughout the province, Baker is struggling to find her way and create a path for her son in the uncertain world that adults with developmental disabilities live in.

This world is as complex as the disabilities of its inhabitants.

When a child with a severe developmental disability - an IQ under 70 is a standard definition of severe - turns 19, and becomes an adult, they cease to be the Ministry of Children and Family Development's responsibility. The onus to care for these adults is transferred to the Ministry of Social Housing and Development, and more specifically, CLBC.

For many families, when their child turns 19 palaces of gold transform overnight into huts of straw and clay. When they complete high school everything stops. The school system provided these individuals with a place to be, a place to learn, a place to socialize and a place of structure and security. So much so, that many of these children voluntarily repeat Grade 12.

"When he turned 19 they said there were no programs he could get into," says Baker.

"They even had me going around from program to program to figure out which one would be a good program for him, before telling me that there was no money."

After a year of waiting, CLBC provided Baker's son with enough money to attend a program one day a week.

. . .

Along with providing services for individuals with developmental disabilities, CLBC supports individuals with Fetal Alcohol Spectrum Disorder and Autism Spectrum Disorder. CLBC provides support by either paying individuals directly or by funding organizations and service providers that provide aid or programs for people.

Many parents and advocacy groups believe that CLBC is underfunded, has long wait-lists and is simply unable to meet the demands of the community it serves.

"We have families whose sons and daughters have been on wait-lists for years for services," says Faith Bodnar the executive director of British Columbia Association for Community Living, one of the primary advocacy groups for individuals with disabilities in B.C.

"There doesn't seem to be proper decision-making around putting money into CLBC's budget every year to address the current wait-lists," she says. "If there was a political will to do it, it would be done. We shouldn't be cutting our province's budget back for the most vulnerable people in the province."

CLBC has an annual budget of roughly $700 million; 93 per cent of that is dedicated to providing support.

This year they provided services to 13,481 individuals. The average cost per person is $48,883 a year.

According to CLBC's 2010 service plan they expect to provide services to 15,449 people by the 2013/14 fiscal year. They project a budget of roughly $722 million a year.

The numbers don't add up.

With an additional 2,000 people expected to be receiving service, and based on their current annual average cost per person, CLBC will need $100 million annualized over the next three years to meet the demand for support. That makes them roughly $78 million short.

To compensate for a lack of increased funding, CLBC is looking to decrease inefficiencies within their system through service redesign. Bodnar questions the plausibility of CLBC's redesigning services to the tune of $78 million.

"In many cases services are being reduced and families are told that there are other people who need money and we need to look at what we can do to cut. Well, they wouldn't say cut, they would say 'service redesign.'

"In our experience it is about budget cuts. What they are doing is looking at addressing wait-lists by finding money in the system - that has meant cuts to services for many people."

Paul Sibley, CLBC's director of regional operations for Vancouver Coastal and Vancouver North, denies that Community Living has a wait-list.

"A wait-list is a misleading term. What we have is that we track people that have requests for service. To call it a waitlist would suggest that people are not receiving services and quite frankly the majority of the people that have requests in for services are receiving (some) services."

CLBC uses the term "outstanding service request." The number of people that have an outstanding service request is not public information. It is connected to their medical information and accordingly it is confidential. Neither Sibley, nor statements sent by CLBC via email provided even a rough estimate of the number of people who have outstanding service requests.

"It is really about prioritizing what peoples' requests are," says Sibley. "There are some people whose needs are more complex and the circumstances surrounding them are such that they would need a quicker response than someone who might like a service. It would be nice (for them) to have that service, and if the world was functioning incredibly well, they might get it. Whether they need it or not is another question. . . . We don't have a time frame."

Liz Barnett, the executive director of North Shore Disability Resource Centre, a program service provider on the North Shore, has witnessed firsthand CLBC's struggle to operate within the confines of its current budget and provide services to those that have none.

"I will tell you as a service provider that is celebrating our 35th year on the North Shore that we are struggling right now," she says. "The service-delivery model that CLBC wants to put in is not something that we are comfortable with. They prefer a different type of model than what we have, and we are not feeling it's appropriate in all cases.

"It is a struggle for us because we have known these people since they were little kids and when they hit 19 there is nothing for them. There is not a residence, there is no day service, there is nothing."

Barnett, like Bodnar, cites CLBC's lack of funding as the main cause of its inability to meet the current demand for services.

Barnett has mixed emotions about CLBC. For her, the parts are not a representative of the whole. The root of the problem, she believes, is that CLBC is a fiscal organization, one that is "driven by outcomes and their outcome is that they have to manage and not beg for money. It doesn't look good for crown agencies to want more money," she says.

Both Barnett and Bodnar realize that CLBC is in a tough position. They both believe that there are individuals within CLBC that truly care about providing people with disabilities the services they require. Ultimately, they both conclude that the heart of issue is the ministry and the government that funds, or underfunds, CLBC.

In a prepared statement, delivered via email, Harry Bloy, Minister of Social Housing and Development, did not promise to lobby for any more money than what is already in CLBC's service plan.

"There's no easy solution with this; we are obligated to manage within the resources we have," he says.

"I'm aware of the challenges surrounding services to people with developmental disabilities. That's why I am taking the time to meet with individual CLBC clients, families, advocates and CLBC staff."

Bloy did not respond to North Shore News' questions about CLBC's "outstanding service request" list.

. . .

"I don't think we have enough evidence out there to really speak with any kind of certainty or clarity about that issue," Sibley says in response to concerns that CLBC is not receiving adequate funding to meet the needs of the community.

Sibley speaks about the way service has evolved over the years, and how it will continue to evolve in the future. He says that simple math calculated from a service plan doesn't reflect the reality of how people are served and how their opportunities will grow in the future.

"Those numbers are very misleading because we don't fully understand them yet, because we are still learning about how to support people better," he says.

The ministry says that through service redesign CLBC plans on saving an additional $22 million within its existing service delivery this year. That money will go directly to supporting new people requesting service

Bodnar says she is aware of the additional $22 million and calls it is a misleading number.

"We saw all of these conflicting numbers and we couldn't get to the bottom of them.

"We had somebody who we would consider an expert look at the budget, and we determined that their operating budget has, in fact, not changed."

Sibley did not bring that figure up when asked again if CLBC was receiving inadequate funding from the ministry.

"I don't know what to say to that. There is a lot money that supports, some might argue, a small percentage of the population," he says. "Thirteen thousand people in the province compared to the population of B.C. and three quarters of a billion dollars is a pretty good ratio.

"The question 'Is it enough, is it too much, is it not enough?' I don't have a clear answer."

. . .

Sibley and Cheryl Baker stand on opposite sides of the disability spectrum, yet to some extent they are intimately connected by a singular passion - to improve the lives of individuals with developmental disabilities.

The passion in Sibley's voice as he speaks about stories of how CLBC has changed people's lives is no different than the passion in Baker's voice as she speaks about the wars she has fought on her son's behalf.

When the word budget enters the conversation, the similarities between the two rapidly dissipate.

Many families and advocacy groups agree that CLBC is capable of providing great service and that the organization is rife with individuals, like Sibley, that have a passion for making the world a better place for the disabled.

For Bodnar, passion will only take the developmental disability community so far. The complex world of people with complex needs doesn't require a redesign; it requires an expansion.

She says that the ministry and the government must intervene because many families are reaching their breaking point.

Baker agrees.

"I can take it. I'm pretty tough, but there are some people that are just so exhausted and they can't take it anymore," she says.

"Their child just stays home all day alone and their parents have to quit their jobs. They begin to resent their child and their child is upset. Marriages break up, all kinds of things happen."

"A long time ago I spent a lot of time crying. I have stopped crying."

dfenton@nsnews.com

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