A struggle for health care

Brianne suffers from a rare neurological disorder called Rett Syndrome

Bill and Kelly Nagy need help taking care for their 19-year-old daughter Brianne.

Bill and Kelly Nagy need help taking care for their 19-year-old daughter Brianne.

The worst thing Brianne Nagy could have ever done is turn 19.

Brianne, or “Breezy” to her parents, Bill and Kelly, suffers from a rare neurological disorder called Rett Syndrome. She weighs just 90 pounds and is confined to a wheelchair. She last ate solid food when she was 18 months old, and is fed through a tube directly into her stomach as she sleeps. She suffers seizures that come without warning, and despite her small frame, she can pose a serious risk to herself and others.

“She’s put a couple care workers out of commission,” says her mother Kelly. “She injured my rotator cuff before.”

Since she was a child, Brianne has split her time between her parents’ Maple Ridge home and Fletcher House, a residential care home operated by Arcus Community Resources. At Fletcher House, she receives around-the-clock care, four days a week, surrounded by the other residents she has known and lived with for years.

The rest of the week, she is at home with her family. She sleeps in a specially-designed $15,000 bed, close to her parents and her sister and brother.

The Nagys have designed their home to accommodate Brianne. The hallways are wide, providing easy access for her wheelchair. Even the couches in the living room split apart, so Brianne can sit with the family in her wheelchair while they watch Disney movies – Brianne’s favourite.

In her bedroom, a special hoist enables her to pull herself out of bed, and with help, into a custom bathtub.

Even though Kelly stays at home to care for Brianne, a care worker is present at all times. Brianne requires constant attention while she feeds at night to prevent her from vomiting and choking on the food pumped directly into her stomach. Should Brianne have a seizure, it takes two people to hold her down so she doesn’t hurt herself. In a typical month she may have 100 to 200 such episodes.

“Breezy is a two-man job,” says Kelly. “One person can’t look after her by themselves.”

For the past dozen years, the family has lived this way. It may not be normal, but it has been stable, and that has been enough.

That changed on Brianne’s birthday this past summer.

Previously, her care was funded through the Ministry of Children and Family  Development. When she turned 19, however, the Ministry of Social Development took over, and the Nagys were forced to negotiate with Community Living B.C. and the Fraser Health Authority for care for their daughter.

The Nagys were told Brianne’s care was be too expensive to continue funding. What the government agencies offered instead didn’t come close to what is needed to care for their daughter, the Nagys believe.

“The transition has been hell,” says Kelly. “All we want is the same care she’s always had. It’s not like her condition changed the day she turned 19. She’s still the same Breezy.”

The first offer from CLBC and Fraser Health was for 23 hours of community inclusion, which would see Brianne take supervised outings in place of going to school, and 26 hours per week for personal care, with no respite care. The other 119 hours a week, the Nagys would have to care for Brianne on their own.

“We were in total shock,” says Bill Nagy. “She has to be monitored like a new born. It would break us as a family.”

Since Brianne needs two people present at all times should she suffer a seizure, Bill says he would have to quit his job and stay home with Brianne.

“I’ve been very fortunate to be able to provide for my family,” says Bill, who runs a custom stainless steel shop in Port Coquitlam. That allows Kelly to stay at home and care not only for Brianne, but for their 16-year-old son, who is autistic and has been diagnosed with attention-deficit hyperactivity disorder (ADHD).

“If I had to stop working, it would bankrupt us,” Bill says. “We would have to give her up.”

CLBC currently supports over 13,400 people with developmental disabilities across the province, with an annual budget of more than $700 million, and those numbers are climbing year after year.

“As the demand for CLBC supports and services continues to increase, we must effectively manage our resources to ensure we can support more individuals and families each year,” a CLBC spokesperson said.

“Fairness and consistent decision making are important to CLBC so that we can ensure equity in support services across the province.”

According to CLBC, funding and the type of support provided depends upon the individual’s current disability-related needs, support preferences, and preferred home environment. Services can include respite, residential supports, community inclusion and employment supports.

Meanwhile, personal home health care is provided by Fraser Health.

The care an individual receives one day prior to their 19th birthday, however, doesn’t seem to be taken into account, says Bill, and that shouldn’t change just because another ministry takes over.

“We just want things to stay the way they are,” says Bill. “Brianne may be 19, but she’s still very much a child. We don’t see why they have to turn our lives upside down.”

Both he and his wife have been exasperated by the process, the constant meetings, emails, negotiations, the uncertainty.

It comes down to money, says Jerry Stanger, Fraser Health’s director of home health care, and in B.C. there is more funding available for children with serious illnesses than for adults.

“All of the health system has financial pressure,” Stanger says. “The home health portfolio also serves seniors, community home support, and people with brain injuries. We have to balance all those needs with the funding we get from the province.

“We have to be stewards of all those dollars.”

However, Kelly Nagy doesn’t accept the argument that there isn’t enough money to go around.

“[The provincial government] can find money for convention centres and the Olympics and a new roof for B.C. Place,” says Kelly. “The government has its priorities all screwed up.”

Stanger says work is being done to smooth the transition to adult services. A committee with representatives from each of the ministries and agencies involved with providing ongoing care meets every two months, he says.

“One of the key priorities is youth transition, we want to try to improve the handoff to make it more seamless, to improve information for parents,” Stanger says. “People can be understandably frustrated navigating the system. It’s difficult when you are working with four or five agencies.”

He says the agencies involved are looking at ways to improve communication.

“I would hope within the next six to 12 months, we would have a protocol we could work with,” says Stanger.

According to a CLBC spokesperson, the Ministry of Children and Family Development and CLBC begin transition planning with families as early as a person’s 15th birthday.

Bill Nagy finds that hard to believe.

He says he initiated contact with CLBC more than two years ago to start the transition process early enough so that it would be smooth. But little progress was made before Brianne’s birthday on July 12.

“They’ve had this on their radar for years,” says Bill. “It’s like one hand doesn’t know what the other is doing.”

After firing off emails to ministers, MLAs, even Premier Christy Clark, CLBC and Fraser Health countered with an offer that would provide the Nagys with enough funding to pay for a care worker to tend to Brianne less than half the time per day than before she turned 19.

But to access it, the family would have incorporate as a non-profit “microboard”, hire a care worker as their own employee, and be responsible for all payroll and tax paperwork.

The other option presented to the family was to leave Brianne full-time at a care home where a spare bed exists, which would be a cheaper option than providing in-home care.

“We don’t want to get rid of her … she doesn’t get the kind of love and affection there like at home,” says Kelly. “All we want is the status quo.”

Because CLBC’s and Fraser Health’s budget isn’t adequate to provide appropriate care for all of its clients, Bill says they are trying to force parents to accept inadequate care for their children, because it costs less.

“It’s just a constant battle,” he says.

“They make you fight for everything, and the parents that don’t fight, don’t get what they should, and that’s what they want, because it costs them less.

“It’s not right.”

Their situation is far from unique, say the Nagys.

“Everyone who has a child with a severe disability has to go through this when their kid turns 19,” says Bill.

On Wednesday, the province announced it would be boosting funding to CLBC by an additional $8.9 million to help provide priority services to adults with developmental disabilities and their families.

The increase represents a 1.2 per cent bump in CLBC’s total annual budget for this year.

“The care, comfort and well-being of developmentally disabled individuals and their families is a key priority for Community Living B.C. and this government,” said Minister of Social Development Harry Bloy. “We have heard the concerns of individuals and their families who are asking for further supports through CLBC, and we are happy to announce an additional $8.9 million to help those who need these services.”

After six months of negotiations, the Nagy’s have finally been offered care similar to what Brianne received before she was 19. She will get three nights a week at home, and four in respite care. However, Brianne will still have to move out of Fletcher House and into a different care home, a prospect that still worries the Nagys.

Unlike Fletcher House, there isn’t round-the-clock nurses on staff at the new care home, just care workers who aren’t able to administer Brianne’s medication.

Because of her condition, Brianne can’t communicate in any coherent way. Her parents can tell when she is agitated and when she is happy and calm, and say the past six months have been hell on her, they say.

“She doesn’t know what’s going on,” Kelly says. “She’s so stressed out. We all are.

“It shouldn’t have to be this hard.”